Archive for the 'Ableism' Category

Why I’m Voting “No” on Massachusetts’ Question 2

Imagine this situation: A woman arrives at a hospital for a medical procedure. She is obviously sick, in pain, and severely disabled. She’s in a wheelchair and on oxygen. She needs help getting from her car to her wheelchair, and going to the bathroom, and changing into her gown. Whenever she’s moved, she grimaces, her hands and feet curled in pain. It looks and sounds like talking and even breathing are an effort. In fact, her disease has rendered her incoherent, so the person with her translates her gestures and sounds to the nurses. The patient is asking for a legal document before the procedure — a form.

The nurse immediately understands. “I know what you want,” she says and returns quickly with the paperwork. She explains that these are advance directive forms that the patient can fill out to decline life-saving treatment. The patient says no, she just wanted to update the contact information on her health care proxy forms, which the hospital keeps on file. In fact, the reason she is certain to keep her health care proxy forms updated is that she does want extreme measures. No matter how grim her situation appears from the outside, she wants her friends to advocate for her right and desire to live.

Of course, this is not hypothetical. The woman is me. That incident happened a few years ago. At the time, I was too stunned to take in the meaning of what happened. It was only later that I realized that the nurse had, in effect, offered me a DNR (do not resuscitate) form without my asking, that she had basically asked me if I wanted to die. It’s possible she offers those forms to everyone, but I doubt it. I think it’s more likely that my appearance, the fact that I was visibly severely disabled, led the nurse to the conclusion that I didn’t consider my life worth fighting for.

That story is part of my very personal reason for opposing ballot question 2: I know the “slippery slope” referred to below is not a hypothetical for the future. Some people have already slid down it. Some people have already been pushed. I learned that day that I had to hold onto my breaks even tighter than I thought I did because I was already on the slope.

But there are a lot more reasons to vote against Question 2. The fact is that even if you support the idea of assisted suicide for dying people — the right of someone who is actively dying, who is in pain at the end of their life and wants a way to hasten death by just a few days – you should still oppose this ballot initiative because it is full of gaps and loopholes and opportunities for abuse. It is, quite simply, a bad bill, a bill that ought to spur you towards Second Thoughts:

  • Question 2 is modeled in the laws in Oregon and Washington — laws which have led to documented cases of abuse, discrimination, and pressures to choose suicide over medical treatment based on cost considerations. For example, from an article by John Kelly in Disability Issues: “Disabled people constantly hear how expensive we are, how money could be better spent elsewhere. In Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying them chemotherapy for their cancer.The letters did inform them, however, that the state would cover the $100 cost of assisted suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. In a system constantly under pressure to cut costs, choice will be constrained.” (More on this topic in this excellent article, PDF, by Carol Gill.)
  • Elders and people with disabilities are at greater risk for abuse than the general public, and they are also the people most affected by this bill. The rate for elder abuse in Massachusetts is estimated at one in 10 already, with the vast majority of abusers being caretakers — family, heirs, and providers of medical and personal care — the same people in a position to help someone obtain and ingest the poison pill.
  • Risk for abuse is inherent in the law: According to the Cambridge Commission for Person’s with Disabilities,Under this initiative, an heir could be a witness and help someone sign up for assisted suicide despite a potential conflict of interest. Once a lethal drug is in the home, there is no requirement for professional oversight to monitor how that drug is administered.
  • The National Council on Disability (NCD) Position Paper on Assisted Suicide states that: “The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed health care and limitations upon health care resources precipitate increased ‘rationing’ of health care services and health care financing. . . . The so-called ‘slippery slope’ already operates in regard to individuals with disabilities. . . . If assisted suicide were to be legalized, the most dire ramifications for people with disabilities would ensue unless stringent procedural prerequisites were established to prevent its misuse, abuse, improper application, and creeping expansion.”
  • Inexact wording and application. Anyone who a doctor says has six months or less to live can be given fatal drugs, but doctors are fallible, medical conditions are diverse, unique, and complex — it is not easy to determine how long someone will live. Many people outlive their prognoses for months or years. Some even recover. (I know someone who was terminally ill 15 years ago, and she’s still writing and publishing books today!) It is also a fact that wherever assisted suicide is legal — whether in Oregon or the Netherlands — the definition of who is eligible becomes broader and broader. It is not confined to people who are imminently dying, but also to people who are not terminally ill, particularly people with disabilities, chronic illness, or elderly people.
  • Inattention to mental health issues. According to Second Thoughts member, John Kelly, “In 2011, exactly 1 out of 71 Oregonians seeking assisted suicide were referred for psychiatric evaluation. With the total 14-year referral rate below 7%, people are not being adequately evaluated. Michael Freeland, who had a 43-year history of depression and suicide attempts, easily got a lethal prescription, and it was only because he mistakenly called an opposition group that he was spared suicide. He also outlived his terminal diagnosis.”
  • One of the key reasons that disability rights activists oppose such laws is that the focus of the laws, and the way they are carried out, are not really about providing more comfort in the last hours of a life that is already fading. It is about fears and lack of understanding about what it means to be disabled or ill — a state that many of us spend our entire lives in, often quite happily. Quoting Kelly again: “That word ‘dignity’ in the act title signals that assisted suicide is not about preventing pain and suffering during the actual dying process, but about escaping the perceived quality-of-life beforehand. People’s concerns listed by prescribing doctors are almost exclusively social: people seek assisted suicide because of limitations on activities, incontinence,feeling like a burden, and perceived loss of dignity. We disabled people know that our dignity does not depend on performing our own self-care or being continent every hour of every day. We know that there are social supports such as home care and PCAs that can remove any family burden, and we understand that our dignity is just fine thank you, without having to die to get it.”

Or, to put it another way, I echo Diane Coleman’s statement, published in the New York Times, “It’s the ultimate form of discrimination to offer people with disabilities help to die without having offered real options to live.”

For more information on Question 2 and assisted suicide, please visit the Second Thoughts website or read this excellent New York Times op-ed on Massachusetts Question 2 which was just published on Wednesday.

Peace,

Sharon, the muse of Gadget, and Barnum, SD/SDiT

Two Things Service Dogs Can Do that Assistive Technology Cannot (with a side note on brain injury)

I’m having that feeling again. That feeling of being in a partnership. Of having a service dog I can rely on. It’s been three years since I last had that feeling, and boy, am I happy it’s back.

Not that Barnum and I don’t still have plenty to work on. We do. But here’s some of what he’s done today, and I’ve only been up five hours (and he was out on a walk for one of those hours):

  • Helped me undress for my bath by removing two socks, two long-sleeved shirts, and — with coaching — a pair of sweatpants
  • Shut my bedroom and bathroom doors to keep the heat in (repeatedly because I and other people sometimes forget to shut them, see below for memory issues in humans)
  • Shut and opened both doors when I needed them opened
  • Went to get my PCA while I was in the bathroom (opening two doors to get to her)
  • Retrieved my walkie-talkie, a plastic lid, and a pen when I dropped them
  • Retrieved my slippers for me (a few times)

And other stuff which I’ll describe below.

The reason I’m writing this post is that several times today I was able to rely on him for things that I hadn’t planned on needing him for, and it reminded me of all the times people have suggested I use this or that piece of equipment — instead of a service dog (SD) — for a particular problem. And why those solutions sometimes fail me. That’s why I’ve categorized this post under “Waspish Wednesday,” even though it’s not Wednesday, and it’s mostly a celebratory post. It’s also because now that I am enjoying the partnership I have waited (and worked) so long for, I am remembering (with some bitterness) all the unhelpful suggestions of people who have told me that I didn’t need a SD for what I need a SD for.

Not that I don’t use or believe in assistive tech (AT). I do. I use a lot of AT, and I am a big believer in people having access to as much AT as they want to improve their quality of life. And I also believe that there are some situations for which AT is much better than a service dog.* And, they are not mutually exclusive. They are complementary — in my case.**

So, here are two things that service dogs can do that assistive technology (with very few exceptions) cannot:

  1. Think
  2. Move on their own

For example, one of the main things I use Barnum for is communication. I have written about this quite a bit, especially in recent posts. When Gadget died, I got a “doorbell” that became my main way of getting my PCAs, but it had a lot of drawbacks that made me miss Gadget all the more. A lot of people over the last three years have suggested a lot of equipment ideas to rely on instead of Barnum. They are a bell (already have it), walkie-talkies (already have them), and an intercom (have it but can’t use it). Even though I use the doorbell and walkie-talkies every day, I still need Barnum. Here’s why:

  1. My assistants and I are human.
  2. I have neurological damage that impairs my memory.
  3. I have MCS (multiple chemical sensitivity).

Let’s start with #3. The reason I can’t use the intercom is the same reason that for quite a while I couldn’t use the walkie-talkies or the doorbell — they are plastic, and they offgas plastic fumes when they are new. The doorbell took the least amount of time to offgas. I don’t remember now — I think it was just a few weeks, primarily because the only part I have to be near is tiny and the bigger, smellier part is away from me, in the kitchen. The walkie-talkies took a year to offgas. The intercom we have had for over two years and it still reeks to high heaven. I doubt I will ever be able to use it.

Problems #2 and #3 are just variations on a theme. I’m human and my assistants are humans, therefore we sometimes forget things. They have sometimes gone home with the walkie-talkie. They sometimes forget to bring it with them outside. They sometimes go to the bathroom or to get the mail and don’t take them with them. One of my assistants refuses to carry it because of the electromagnetic radiation it emits.

Plus (#3) I have a disability which specifically fucks up my memory, therefore I forget a crapload of things all the time. Every day, many times a day, I forget things, often the same things, repeatedly. All these ideas you might have for dealing with this? Writing things down? Carrying things with me? Velcroing them to me? Timers? Alarms? I’ve tried them all. I already use them all. And it’s still not enough. So don’t fucking suggest them. Please. (That was the waspish part. Could you tell?)

Anynoodle, what I have done in the years since Gadget’s death and Barnum becoming a reliable SD is use the doorbell, and more recently, the walkie-talkies. They certainly are much better than not having them, but there are issues. One is that sometimes I can’t speak, so when that happens, the walkie talkies are about as useful as the doorbell in that they can convey only one piece of information: “I am trying to get your attention.” This can be very limiting, whereas having Barnum bring a note is much better, as I explained in this post.

Another issue is the brain damage/memory thing. I lose these pieces of equipment. A lot. I used to lose the doorbell and the walkie talkies constantly. Frustratingly constantly. Because the problem was that when I taped the doorbell to my overbed table, I didn’t lose it, but I could only use it when I was in bed and not to call for help from the bathroom. Then I got the walkie-talkies, mostly for their portability, and I’d forget to take them with me to the bathroom. (Oh, and someone suggested — after I explained about my memory — that I keep another set of walkie talkies in the bathroom at all times, which tells me that this person doesn’t use walkie talkies because they have batteries that must be charged every night, like a powerchair. If I left them in there all the time, the batteries would be dead when I need them. It also assumes I’d be able to find and reach them in the bathroom which is used by other people. Or perhaps she thinks I should buy three or four sets of walkie talkies?)

Then, I got the brilliant idea of Velcro! I velcroed the doorbell and walkie-talkie to my overbed table where they are within reach and cannot escape. I also put Velcro on my powerchair so I could bring them with me. This has worked very well for the doorbell in that I just leave it velcroed to my overbed table all the time, so I never lose it. But for the walkie-talkie, sometimes I leave it stuck to my overbed table, and I can find it. Sometimes I lose it in my bed. Sometimes I attach it to my chair and then use it when I need it, but more often, I attach it to my chair and then can’t get to it because I’m in the tub or on the toilet and my chair is out of reach, or I have gotten back in bed and left the walkie-talkie attached to my chair, and I can’t reach it, etc. (The bathroom that has the tub is not wheelchair accessible.) Or I bring it to the bathroom with me and put it next to the tub/toilet and then forget to take it with me when I leave and then it’s in the bathroom and I’m not, and I can’t get to it. See how helpful that piece of AT is?

Ahem.

But NOW, I have a working SD. So, today when I wasn’t sure if I needed help getting dressed or not after my bath, but I really wanted my PCA to go make me lunch because our time is limited, I could send her off to the kitchen with the agreement that if I needed her, Barnum would come get her (because I had left the walkie-talkie on my powerchair and also forgotten I had it with me, whereas Barnum’s a lot harder to miss!). And when I stood up and realized yes I had used too many spoons and I needed to get to my chair FAST before I fell over, I could have Barnum open the door ahead of me and skeedaddle out of the bathroom so I could make it to my chair, as opposed to having to sit back down on the toilet, wait for my PCA to come back, help me up, and get to my chair, which would used more PCA time and even more of my spoons. And when I dropped the walkie-talkie (that I’d forgotten I’d brought and therefore didn’t think to use and therefore left it behind), Barnum picked it up and brought it to me. And when I forgot to put on my slippers and they were in the bathroom and I was already in my chair, I could send Barnum back into the bathroom to get them.

You cannot call your bell or walkie-talkie or slippers when you leave them somewhere. Well, you can, but they won’t come. They also won’t retrieve things. They also won’t open doors to get to the thing or person you want.

I love my powerchair. I would be in trouble without it. But sometimes if I am feeling well enough, I prefer to walk to the bathroom, for example. (I try to always use as much energy as I can without overdoing; it’s a very difficult balance.) Sometimes it is fine and good to walk to the bathroom. Sometimes it’s impossible and I don’t try. And sometimes my powerchair is charging or I think I’m doing better than I am, and I discover that I have used too many spoons (especially now that I’m on Clindamycin which means I’m spending a lot longer on the toilet than I’m used to!) to get back to my powerchair, my doorbell, my walkie-talkie, my bed, and I might need my service dog to help me get up and walk back, or to open the door, or to get a human assistant to bring me my chair.

Choices. Having a service dog offers me choices. Because I can choose what needs doing in the moment based on what and how I’m doing and what I need, and I can ask him to do that particular thing, and he can do it nearby or at a distance. He can get and bring the thing or person I need. Because he can think, and he can move all on his own, without a joystick. Though he does bring me a lot of joy.

- Sharon, the muse of Gadget, and Barnum, SD

*I believe that wheelchairs and other mobility aids are generally preferable to service dogs for ongoing mobility needs such as balance, walking, etc., because frequent use of dogs as mobility aids can be physical damaging and dangerous to the dog. If you are a full-time wheelchair user, I think it is better to use a powerchair than to have a SD pull a manual chair. If you need walking assistance frequently, a cane, walker, or chair is probably a better bet. However, sometimes you need both. For example, when I have had my powerchair break down, I have used a manual chair with a SD helping to pull it as an emergency backup measure.

**I realize that some people use human assistants or canine assistants or AT instead of one or the other or both of these, and I fully support everyone having the options to make these decisions because no two situations are the same. Everybody’s situation is unique. For example, I know a lot of guide dog partners who do not use a cane because their guide dog is a far superior navigational aid, and I also know people who use both when training a dog or when an issue arises and people who prefer a sighted aid (person) or a cane. And all of us who partner with assistance dogs have times when we cannot use our dogs — when they are sick or have died or have retired — and we have to make do with AT or people in the meantime. I know people with physical disabilities who use SDs so they don’t have to rely on PCAs or certain types of AT, and I support that, too. In my case, I rely on all three, and I am fine with that, too.

Public Comments to the National Council on Disability

I was asked by Mary Lamielle of the National Center for Environmental Health Strategies (NCEHS) to call in with testimony to the National Council on Disability (NCD) during their public comment period today, Thursday, July 26.

What is NCD?

NCD is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. NCD is comprised of a team of fifteen Senate-confirmed Presidential appointees, an Executive Director appointed by the Chairman, and eleven, full-time professional staff.

In its invitation for public comment, NCD noted:

NCD will accept statements on any topic but is particularly interested in discovering what the public believes should be included in NCD’s 2013 statutorily mandated Progress Report to the President and Congress. Individuals interested in submitting public comments may do so in-person or by phone and should provide their names, organizational affiliations, if any, and limit comments to three minutes. Individuals may also submit public comments in writing to PublicComment@ncd.gov using the subject “Public Comment.”

Mary had previously emailed me to ask me to sign on to the recommendations she was circulating in the disability and multiple chemical sensitivity (MCS) community for the NCD’s meeting. These recommendations, which I support, are as follows:

1. The NCD should play an active role in organizing and participating in an Interagency Committee on Chemical Sensitivities;
2. The NCD should examine the significant levels of harassment and discrimination experienced by those with chemical and electrical sensitivities in housing, employment, education, healthcare, medical services, and daily life;
3. The NCD should support federal research on chemical and electrical sensitivities;
4. The NCD should adopt the CDC Fragrance-Free Policy;
5. The NCD should adopt a fragrance-free and healthy, accessible meeting policy similar to that of the Access Board; the NCD should also adopt a policy to limit exposure to electrical devices and frequencies at NCD meetings; and
6. The NCD should support the addition of a Board member with expertise on chemical and electrical sensitivities.

Here is what I will be saying in my public comment by telephone later this afternoon:

My name is Sharon Wachsler. I have multiple disabilities, and I’ve found that not all my disabilities are treated equally even within the disability community. I’m generally able to use my service dog, my powerchair, and a sign language interpreter or the relay without any problems. But when it comes to my access needs stemming from multiple chemical sensitivity, there are always problems. Every year I had to fight my CIL to get a fragrance-free nurse for my annual PCA evaluation. There are no hospitals or doctor’s, speech-language pathologist’s, psychotherapist’s, or CIL offices accessible to me.

I have a close friend who is Deafblind and a lifelong wheelchair user. She has told me on many occasions that having MCS is the worst of her disabilities. She has given up trying to work with case managers, assistive tech providers, and other disability organizations because they do not listen or abide by her needs for products and services that won’t make her severely ill and cause her other disabilities to worsen.

When we had an ice storm in Massachusetts in December 2008, and I had no heat, power, water, or phone for a week, I couldn’t be evacuated; there were no MCS-accessible shelters. Two friends who have MCS were also stranded. One of them suffered hypothermia. The other ended up in the hospital which caused such damage to her health that she was in chronic respiratory arrest for two years afterwards.

Just last week a woman with MCS called me about trouble getting workplace accommodations. I referred her to the DOJ ADA hotline. She said she’d already called and been told, “That’s not an ADA issue. It’s a building maintenance issue.” How many other people with MCS have called the hotline and been told that their access needs aren’t real?

I have stories like this for every day of the year. It is for these reasons that I urge you to implement the six recommendations proposed by Mary Lamielle of the National Center for Environmental Health Strategies.

We are not separate from you. We are a part of the disability community. Our needs must be heard, respected, and accommodated.

If you would like to support the efforts of the MCS community to have our issues included by NCD, please email your comments to PublicComment@ncd.gov and put “Public Comment” in the subject line. Please also send a copy of your comments to marylamielle@ncehs.org. They’re accepting public comments by phone on Thursday and Friday, but if you can’t get your comment email sent by Friday, just send it when you’re able.

If you’re not sure what to say, you can talk about your experience with MCS or electrical sensitivity or that of friends, family members, colleagues — or me! No matter what you say — even if you say nothing else — you can copy in the six recommendations of NCEHS above and indicate your support of them.

Thank you very much for your support!

- Sharon, the muse of Gadget (who had chemical sensitivities), and Barnum SD/SDiT (and blessedly healthy so far)

REPRISE life w/lyme, mcs, cfids: a different kind of typical atypical

This post is for the June Disability Blog Carnival at never that easy. The topic is “Arbitrary” — anything on disability you want people to read. I chose to reprint a post that I wrote in May of 2011, with this new introduction. May is both Lyme Awareness Month and MCS Awareness month, and I was trying to blog a lot on both illnesses that month.

The reason I chose this post is that it’s not at all like my typical posts. As an editor and proofreader, I usually try to have “clean” posts — proper capitalization, punctuation, grammar, and spelling. In this post, not only did I not conform to standards, I actually stopped myself from backspacing to eliminate errors, something I normally do a great deal. I didn’t do this to be annoying. I did it for two reasons, and I’m reposting it for a third.

One reason is that when you’re severely in pain and exhausted, things like holding the “shift” key and another key at the same time to create a capital letter, or needing to take a hand off the keyboard to move the cursor and then get that hand back on the keyboard to correct an error, can be too darn hard. That effort often keeps me from writing. I really wanted to blog that day, and I didn’t want my pain and illness to stop me. This was me saying, “Fuck you,” to my limitations, and to the tyranny of internalized ableism.

The second reason is that I do a great job of “passing,” especially in written form, around my cognitive impairment. People who are not part of my day-to-day don’t understand — and often, really, don’t seem to believe — the amount of cognitive impairment I have. Being basically smart, well-educated, and articulate, I have more to fall back on than someone who didn’t have these benefits. Also, there are tools like spell-check and grammar-check, both of which I use. I usually reread a post, sometimes several times, to fix errors, and I do a lot of backspacing to fix errors I find in previous sentences.

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

The third comment is for all the writers and other language snobs out there, of whom I am one! I am a total “wordie” (as food is to foodies, words are to wordies — or logophile, if you prefer), a grammar geek, a punctuation nerd. I make no apologies for this. AND, there is a difference between enjoying and finding pleasure in well-written prose, in praising readability, and looking down on people who make errors or who don’t know a lot of the basic rules of grammar, punctuation, and spelling. As a writer, I have a lot of online friends who are writers, especially on Twitter. I can’t tell you how many times I read snotty comments about people who write in all lowercase or people who misspell or whatnot. I wanted to reprint the post below to say, “Hey! There are sometimes good reasons why a person might not use the shift key. There are physical and cognitive disabilities that might make following basic rules of grammar onerous or even impossible. Check your ableism at the door, please! We still may have something worthwhile to say.” I believe the post below does have something worthwhile to say, both because and in spite of the copious language errors.

- Sharon

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.
Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

Service Dogs & Friends: Familiarity Breeds … Confusion? BADD 2012

This post is in honor of Blogging Against Disablism Day (BADD) and the spring issue of the Assistance Dog Blog Carnival (ADBC).

The graphic for BADD. Along the top, in yellow letters on a dark green background, it says, "Blogging Against Disablism. Below that is a multicolored square comprised of twenty smaller squares with one stick figure in each, mostly standing, some wheelchair symbols or with canes.

BADD 2012!

Every year on May 1, bloggers from around the world post about some aspect of disability oppression. This is what’s known as a blogswarm. Check out the huge number of excellent posts — entertaining, emotional, or educational — at this year’s BADD!

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.

Effects on others

The topic for this quarter’s ADBC is, “How has a working dog in your life affected other people and/or the relationships in your life?”

Lately, I’ve been forced into the realization that, in many ways, raising, training, and handling my own service dogs (SDs) has a negative effect on my IRL (in real life) human relationships, and likewise, my human relationships make raising, training, and handling my SDs much harder. I have many rich, rewarding relationships with other assistance dog partners and trainers online, but when it comes to people I see in the flesh or talk to on the phone, I have no SD partner friends. Ironically, the biggest challenge comes not from those who dislike or are indifferent to dogs. No, the biggest challenge comes from those in my life who are fond of or have some sort of relationship with my dog(s) or who feel a connection to the SD world.

Here are some of the common problems, many of which overlap with each other:

  • Some perceive me as an extension of my service dog. They often prioritize their interactions with the dog over their interactions with me. They may or may not have any problem with me, but still may only want to be around me to interact with my dog.
  • Some see my SD as just a dog, a pet, and are either unwilling or unable to see that my SD’s role in my life is much more complex, and requires much more upkeep and care, than that of a pet dog. They want to do what they want to do with the dog because it’s fun, and it makes them feel good. The effect that their behavior has on me and my working dog is either unclear to them or less important to them than the pleasure they derive from doing what they enjoy with my SD.
  • Some misinterpret behavior that I allow or encourage with my own SD as giving them special privileges to interact with other people’s SDs in similar ways. They don’t seem to understand the difference in acceptable behavior with a dog who is at home, not working, and with whom they are interacting as a house guest, with acceptable behavior with a stranger’s dog or even my dog when he is working or training.
  • Some have their own relationship to my SD and feel hurt or angry if I put restrictions on their interactions because of choices I make for the good of my working partnership or training. They may or may not intellectually understand or agree with the behaviors I am requesting or enforcing, but they still find them emotionally difficult. They may also think I’m being “mean” (or capricious, or dictatorial) to the dog or to them by disallowing behavior that disrupts my dog’s manners, obedience, or ability to work but which they find pleasurable (or which they believe the dog enjoys).

Here are some recent examples of how these situations have played out. I have altered some details to preserve anonymity.

1. “I saw a service dog and thought of you.” The story I relate below has happened with other people, in similar circumstances, over the last 13 years.

A recent acquaintance who met Barnum, my service dog, at my house a couple of times mentioned in a phone call that she met a miniature poodle SD while at the grocery store. She then said, “I bent down — because I wasn’t allowed to pick her up — and she gave me many kisses. I thought of you and Barnum.”

I didn’t know the particulars of the situation, so I didn’t know the service dog handler’s policies, comfort level in asserting her needs, the dog’s job, or my acquaintance’s relationship to the handler, but hearing her say this, I felt very uncomfortable. It is a universal experience for assistance dog (AD) partners that wherever we go, our dogs attract attention. Some partners enjoy a certain amount of attention from the public as an opportunity to educate or to feel less isolated. However, almost every AD partner I know — and I know a lot of people with guide, hearing, and service dogs — hates the constant intrusions, interruptions, and distractions of members of the public asking them about their AD or talking to, petting, or otherwise distracting their AD from its job. We find the work involved with constantly interacting with people we have not chosen to interact with exhausting.

The overwhelming majority of the people who cause us so much distress do it unwittingly, with only good intentions. This is part of what can make it so hard to deal with. These kind-hearted, dog-loving people usually feel happy and excited to see a working dog and may feel a connection to that team because of their relationship with me or Barnum. They may want to connect with that person or their dog, thinking that they are offering support by way of understanding. What they often don’t realize is that the partner/handler’s experience is quite different. We deal with comments, questions, and distractions all day. We generally don’t care if your friend or niece has a SD, or if you puppy-raised once, or if you follow a hearing-dog blog.

Within an hour or two of being in public, I can have a dozen people stop me to ask, “What kind of dog is that?” “What’s his name?” “What does he do for you?” “Where did you get him?” “Can I pet him?” “How long have you had him?” “He’s so handsome!” “I have a dog, too, but he’s not nearly that smart!” “What a wonderful friend he must be to you!” “Aren’t you lucky to have him!” “I wish I could have a service dog,” and on and on.

The questions and comments are difficult enough, but at least we have some control over how we choose to answer (or ignore) the questions. What we cannot ignore, and what can often be dangerous to our safety and well-being, are people who interfere with our canine assistants. Any of the following constitutes interfering:

  • Talking to the dog (or talking “about” the dog to their handler using a high, squeaky, excitable, baby-talk voice)
  • Petting the dog
  • Extending their hand for the dog to sniff
  • Thumping the dog on the back as they walk by
  • Clapping
  • Whistling
  • Shouting or making other sudden or unexpected movements to “test” the dog
  • Stepping on, kicking, or running into the dog with a shopping cart (yes, people do these things)
  • Leaning down to get kisses

Part of the problem seems to be that some people, like my acquaintance, are trying to be respectful and “follow the rules” but they don’t get the overall concept of what good “assistance dog etiquette” is. They see the dog’s “Don’t Pet Me” patches, so they don’t pet the dog, but they talk to the dog instead. This can be even more distracting to many dogs. This is why many of us are switching from patches and signs that say, “Don’t Pet” to “Do Not DISTRACT.” For example, my guess as to what happened in the case of my acquaintance who got kisses from the miniature poodle is that they asked to pick the dog up (which shocked me in itself! Fortunately this is something nobody ever has asked me, since I have an 80-pound dog), and when the handler said, “Sorry, no,” they either asked if they could “say hi” or they just went ahead and did it.

Note: Just because an AD partner tells you it’s okay to pet their dog or talk to their dog doesn’t mean it actually is. They may be so worn out by saying “no” all day, or they may have received enough hostile reactions to their “no,” that they just give up and allow it, hoping it will make things faster and easier than trying to explain why it’s really not okay.

I was particularly concerned when I heard the miniature poodle SD story because small breed SDs are almost always used for some sort of health alert. They may alert or respond to seizures, changes in blood sugar, or psychological states, such as panic attacks, PTSD episodes, depersonalization, dissociation, or other states that require the dog to be completely tuned in to their partner at all times. They are likely on the watch for a change in their partner’s smell, gait, facial expressions, or other behavior. A dog that is busy kissing someone or being petted is not going to notice these things. You cannot necessarily tell by looking at an AD whether it is “on duty” or not. It is safest for the team if you assume the dog is on duty.

I have heard, over the years, from my friends, health care workers, family members, and others that they approached strangers with assistance dogs because they “thought of you and Jersey/Gadget/Barnum.” I’m always shocked, and I’m almost always tongue-tied. I know they are acting out of fond feelings for me or my SD, but I want to tell them, “The kindest and most supportive thing you can do for any working or training team you see in public — the best way you can honor me and my 13 years of training and partnering with service dogs — is to completely ignore the dog.” It goes against human nature, I know. But it’s really what the vast majority of us want. It is certainly what I want when I’m in public, training or working my dog.

I feel very uncomfortable not knowing how to educate people when I hear these kinds of comments. They pop up out of nowhere, and not usually in contexts where I can stop what I’m doing and go into gentle-assistance-dog-handler-education-mode. So I often say nothing. Then I feel guilty that I am contributing to the problems other handlers are facing with these people who likely think I approve and support their choices to interact with strangers with working dogs.

2. A person’s relationship to my dog — as a dog, not as my working dog — is more important to them than their relationship with me.

Someone recently ended a relationship with me because we had differing desires for how he would interact with my dog and what we saw his role as being. This was someone whom I perceived as “a friend who really likes my dogs.” I thought he was interested in helping me out with them in part because it was useful to me, and in part because he enjoyed his time with my dogs. I discovered, however, that his interest was entirely in having fun with my dogs, and that he did not consider me a friend. This has been a painful discovery for me.

I thought we were friends with a long history of a shared love of my dogs. I knew that there were sometimes conflicting desires about how he wanted to interact with my dogs versus how I wanted them to interact together, but I thought we had the same goal of me having healthy, happy, good working partners. In a recent interaction where this person explained his perception of our relationship, he said that his only sadness was that he would not be interacting with my dogs anymore. He did not feel sad that we had ended our relationship with conflict.

In this conversation, he referred to my service dogs as “your pets.” To me, this explained a lot.

Our disagreements always involved my requesting him to require certain standards of behavior from my dogs. Not to jump up to greet him was one. Not to pull on the leash was another. To sit before and after exiting the vehicle. These rules were for my own and the dogs’ safety, for the dogs’ sense of stability in knowing what was expected of them in all situations, and for their ability to retain the behaviors I needed in my canine assistants.

However, this person and I had different agendas, and it’s only now that I realize how big that difference was. When I saw him allowing, or encouraging, my SD to jump up on him in greeting, I thought that he just didn’t understand why that was a problem, that I hadn’t explained it fully enough. So, I would explain again. I learned, eventually, that he did know that I didn’t want this behavior, but he wanted it, so he “snuck it in” when I wasn’t looking. It was their little secret, between them. This worked alright with my previous SD, Gadget, who was able to distinguish what behavior was allowable with this person only, and what was required with everyone else. However, Barnum, whom I’ve raised from puppyhood, doesn’t make these distinctions as easily and generalizes more. Therefore, it’s very detrimental to his training to have jumping up allowed or encouraged, ever.

Similarly, for the past two years one of my helpers and I have spent hundreds of hours working on loose leash walking with Barnum. I have worked with everyone in my household who ever has Barnum on leash for a split second about how to preserve this training. I couldn’t understand why we could never maintain our progress. Then I discovered that this guy was allowing, or even encouraging, excited behavior which involved, or led to, pulling on leash. I explained again, as I had so many times, why it was important not to let Barnum pull. That was the end of our relationship. He let me know that his interest was in having fun with my dog. Having fun did not involve having to follow my rules for interacting with Barnum.

Of course, everyone has different needs and desires in a relationship. I can understand that some people just want to have fun with a “pet” and not worry about the impact their behavior has on that dog’s person. At the same time, none of the dogs this man knew were pets. They were all working dogs. Canine assistants. The equivalent, for legal purposes, of assistive technology. My SDs make my life safer, less physically painful or exhausting, assist with my communication with others, and provide me with more independence. I almost never leave my house. I am confined to bed almost fulltime. I don’t get to socialize with anyone IRL, except my PCAs and part of my family. In other words, my life is extremely confined, constrained, and limited. Any tiny drop of increased energy, decreased pain, or increased freedom is unbelievably precious to me. And anything that interferes with my dog’s ability to provide this assistance is very painful — sometimes unbearably and heartbreakingly so. I have been without a fully trained assistance dog for three years — since Gadget’s cancer went out of remission in 2009. Sometimes I just can’t stand how long it’s taking, and how unbelievably hard it’s been, to train Gadget’s successor. Knowing that someone I considered a friend doesn’t care about that at all really hurts.

To know that someone I thought of as a friend prioritized their unalloyed fun with my dog over my ability to finish training my dog to improve the quality of my very limited life is quite painful.

3. A person’s relationship to my dog is often intertwined with their feelings about, or relationships with, their parents, their children, their inner children, their own animals, etc., and when I don’t allow them to interact with my SD in ways they find emotionally comfortable, soothing, or pleasurable, they sometimes get very upset.

Sometimes these people are aware of the emotional triggers taking place and can talk to me about it. Then we can talk about what’s going on for them. I can try to empathize with them while also taking care of my own need for my dog’s behavior to be under my control. I hope they will be able to hear me when I explain the practical reasons why I’m asking them not to talk to or pet the dog, let him jump on my bed, beg for food, get treats, etc. Sometimes we can understand and support each other. Sometimes I end up feeling very lonely and exhausted by having to defend my methods. I worry that people in my life think I’m being “mean,” or that I’m just making up rules because that’s fun.

The bottom line in all these situations is that I wish people would understand that my service dog is not a pet. He is not a toy. He is not in their life for their entertainment. Yes, very often my dog and the people in my life share play, love, and affection. I really enjoy when people in my life love and respect my dogs. But, foremost, I want them to recognize — and act accordingly — that my dog is in my life to help me lead a safer, more independent, healthier, richer life. Lately, I look back with longing on the days when I trained my previous two dogs pretty much in isolation. When I lived alone and did not have assistants and carers in my home most of the time. The lines of communication were much clearer with my dogs.

However, back in those days, I was not nearly as sick and disabled as I am now. I no longer have the option of relying primarily on my service dog and my self to survive. For better and for worse, I have people in my life much more of the time, and for better and for worse, these people interact with my service dogs or dogs-in-training, and I have to do constant training and management not only in training my SD, but with these people in how they interact with my dog.

- Sharon, the muses of Jersey and Gadget, and Barnum, SD/SDiT

Disability & Occupy: Disability Blog Carnival #79

Disability Blog Carnival badge by Ryn, featuring a black-and-white photograph of a man and a boy. The man is in uniform and holding crutches; he is apparently an amputee; the boy is holding onto one of the crutches as a child might hold an adult's hand; the two are photographed from behind, and we see beyond them a seashore and a suspension.bridge

The Disability Blog Carnival Badge

I’m delighted to be hosting the seventy-ninth Disability Blog Carnival. I chose the theme of Occupy (as in Occupy Wall Street/#ows) for this edition. I have to say that I’m proud of this post. It makes it abundantly clear what we have to teach each other and ourselves, and what we have to learn.

I posed a lot of questions for people to respond to for this carnival. However, the majority of the posts in this edition were written before my call for entries, indicating that Occupy is on the minds of many who blog about disability already.

Black and white picture of a middle-aged white woman with short dirty-blond hair. She is wearing a white, sleeveless shirt and holding up a sign that says, "I have a Master's Degree, Systemic Lupus, Two Kids Entering College in Fall, and Less than $20 to my Name. I am the 99%.

One of the pictures from the Facebook photo album, "Faces of the 99%"

Occupy Activists with Disabilities

I enjoyed a great deal reading posts by people with disabilities who found joy, meaning, liberation, or other empowerment by participating in Occupy activism.

I thought it would be appropriate to start the carnival off with a post by Penny at the Temple University Disability Studies blog — the home of the disability blog carnival! — has a blog post up called Disabled and Proud at Occupy Oakland. It is mostly a short Youtube video of the General Strike called by Occupy Oakland, and it includes people with disabilities who are activists there. Penny has transcribed the portion of the video where the people with disabilities are being interviewed.

Rocking (and Flapping) at a 1000 Revolutions a Minute is definitely one of my favorite posts on disability and Occupy. It is a must read! This incredibly powerful, liberating post by Savannah Logsdon-Breakstone of Cracked Mirror in Shalott includes a captioned video Savannah took of herself at an Occupy DC event, off by herself, rocking, and how doing that contradicts the harmful messages she’s been subject to based on others’ responses to her being an Autistic:

The week before I sat in the park and rocked, feeling my defiance, I spent several nights wishing I didn’t exist. I knew all the things I talk about here intellectually, but that base part of me is still filled with the remembered abuse of my past. The most prevalent are those that were excused at the time as treatment while speaking words describing me as a burden and my being as a barrier.

Denise Romano spoke at the #OccupyWashingtonSquare Park General Assembly, addressing worker’s rights, in which she included the rights of people with disabilities. As someone with an intermittent speech disability, I was excited to read Denise’s opening sentence to the GA where she essentially tells them to ignore her speech disability and then goes on to deliver a comprehensive, kick-ass labor rights teach-in. The text of her speech is up at her blog, Workplace Credible Activist, in the post, Occupy Your Workplace (scroll down to where it says “My name is Denise Romano” to read the speech).

When we demand zero harassment
we must not engage in harassment

When we demand zero discrimination
we must not engage in discrimination

When we demand zero retaliation
we must not engage in retaliation….

Connections and Intersections

In her post, Decolonizing Our Voices, Savannah Logsdon-Breakstone of Cracked Mirror in Shalott describes the parallels she sees between the 99 percent movement and her activism against oppression of Autistics. In fact, she published this post on Autistics Speaking Day, an annual event to counteract the messages of pity and misinformation coming from certain autism organizations (which are run by non-Autistics).

After some thought, I’ve decided that there’s too much of a cross over for me in the work of Decolonizing Wall Street and of our voices as Autistics to not write this post today. While people in general are seeing their demands of their political representatives co-opted or diverted by corporations, Autistics routinely have our voices co-opted by our allies and diverted by large ‘non’-profits such as Autism Speaks.

In her post, Why I write… yes, fibromyalgia and Occupy in the same post, Kathy of The Fibrochondriac admits that blogging just didn’t feel fulfilling for her, didn’t give her a sense of purpose, when she was focused on fibromyalgia information and resources:

Then purpose found me… I started looking for things to talk about with John (domestic partner/husband). And I found a lot of things I didn’t like about how our government worked. Then I started meeting people who are just as concerned as I am. And it felt good to get out and listen to what they had to say. Yeah, Occupy. Again.

Lynette, who blogs at The World As I See It, My Life As It Happens, takes us on a journey of her initial lack of interest in Occupy Halifax to a ripening consciousness of what the movement could become and the role of disabled activists within it. In her post, Occupy your Heart, Occupy Your Mind, Occupy Your World, she begins her discussion of the role and burden of the disabled activist in this way:

But if I stepped back and did not get involved, i could not expect anyone in the occupy movement to represent my interests as a disabled woman. A homeless addict or a third-year college student who has never met a blind person isn’t likely to understand how society should change to include me and others like me. If I don’t make my voice heard, then I can’t expect the movement to recognize my needs.

Deciding Against Occupy

Like Lynette, Brooke at Ruled by Paws started out leaning in one direction and ended up in the other. Whereas Lynette started out skeptical and ended up being drawn in by the movement, Brooke initially thought the movement had appealing ideas, but upon reflecting on what a successful Occupy movement would mean, she has decided she is not in favor of it. In The Occupy Movement, she starts out her ponderings with questions:

I have found myself more and more skeptical of its effectiveness and continue to wonder if the ‘99%’ includes people like myself. If the Movement were successful, would I benefit? Would the world become more accepting and accommodating of people with disabilities? Or would we be pushed aside, and left to fend for ourselves in an even more undemocratic and economically unbalanced society.

Exclusion and Alienation

Even among pro-Occupy activists, the relationship between Occupy and disability rights is not all shiny-happy-people-holding-hands! Some who have participated — or tried to participate and been thwarted — in Occupy activities have met with ableism.

One of the most powerful posts I’ve read about Occupy and disability — and which has been much discussed and ranted about in the disability activist community — details the infuriating, heart-wrenching, and all-to-familiar experience of Big Noise in her post, Who Are My Brothers and Sisters in the Struggle for Justice? So many amazingly appalling things take place, I couldn’t decide what aspect to tease: That the organizers picked a meeting space up three flights of stairs? That they booed the blogger’s allies when they raised access concerns? That they used sexist comments to try to shut up her husband? That try tried to turn things back around on her and give her a sob story? If you are an Occupy activist who is not familiar with disability access issues, you seriously need to read this post!

Noah’s post, Dear Ableist Assholes in Occupy Seattle, gets right to the point in his first two sentences: “I am a wheelchair user who took part in the December 12th West coast Port shutdown. I want to say fuck you to all the people who belittled me and talk down to me while I was out there.” Along with his link for the carnival, Noah provided some interesting information about how the post was received and why it’s at Our American Generation:

This is an open letter I posted in the Occupy Seattle Facebook. It has since been removed from the group page because of the controversy it started. The comments it received were very harsh and offensive to many people. The letter was a response to the way I along with my friends were being treated. The harsh language was used on purpose to show that people with disabilities are not submissive and to question how people view myself.

Anonymous, posting at Occupy at Home (#OAH), urges members of the movement to become aware of multiple chemical sensitivity (MCS) access, as well as to make the connection between the 99 percent movement, MCS, and corporate interests. To the Other 99%: Dump the Corporate Toxins & Let Us Join You! Anonymous declares:

We see how corporations have been making, marketing, and selling everyday products with cheap, unnecessary, harmful, toxic ingredients derived from fossil fuels, while they claim these pollutants are safe. We see their efforts at blocking legislation to ban toxic ingredients and preventing warnings to consumers to keep their cell phones at least an inch away from their bodies at all times and to keep them off when not in use.

Educating Occupies about Disability and Access Issues

Some bloggers are addressing nondisabled members of the 99 percent in an attempt to raise disability rights consciousness and provide disability access education.

One of my favorite efforts in this area is by Occupy On Wheels: Awareness, Inclusion, Solidarity. OOW is actually a group with a Facebook page, not a blog, but they created an incredibly spiffy video that I’m considering a vlog and posting it here. It is a funny, easy-to-understand, and very engaging 17-minute video about wheelchair access: What makes a location wheelchair accessible or not, why camping out is not powerchair accessible, how to find accessible locations, etc. It is close captioned and narrated. A transcript of the video is here on Facebook or here at the Occupy at Home blog. I’ll edit this post to put in the link to the transcript when it’s ready.

OOW also has many excellent articles, including, “Tips: Is your GA meeting accessible?” “Protest Signs & Alternative Ways to Show Your Solidarity,” and “Mini Occupies: A Day-Time Alternative to Camping Out.”

The reason I’m happy that I’m a day late in publishing this carnival is that it allows me to include this just-posted link on a really crucial issue for the Occupy movement. At Pushing Limits, the blog of the KPFA radio show by the same name, Adrienne Lauby introduces the topic for her next show, Mental Disability Within Occupy. The show airs tomorrow, Friday, and will feature three guests:

Herbert Darren spent a month at the Occupy L.A. encampment. David Parks and Eve are heavily involved in Occupy Santa Rosa. All three live with mental disabilities. All are (or have been) homeless.
The stereotyping of people living with mental disabilities and homeless people during the Occupy encampments could have set our mutual liberation back for decades.  If it doesn’t, it will be due to a radically different story from those who came to the Occupy camps to protest and meet each other face to face.

My entry for this carnival is Corporate Control of People with Disabilities, which I posted at Occupy at Home (#OccupyatHome). I’ve been very pleased with the reception this post has gotten so far; the comments section is like reading a second post on the topic!

If you do not have a disability, it probably does not occur to you that you need permission from someone in authority to take a bus, to read a book, to go to the bathroom, to talk on the phone, to leave your house, to enter a public space. Corporate control over our lives in conjunction with government authority is not a shocking new concept; it is what we are used to. In fact, for some of us, it literally comes down to needing a doctor’s approval to take a shit.

An earlier post of mine, also at Occupy at Home (#OAH), is Occupiers: How Do/Will You Represent Me?

I frequently hear people say, “I, a person at an encampment, represent many people who aren’t here.” I appreciate the recognition that there are many of us who want to be there, but cannot. As someone whose disability causes me to be isolated and invisible to a great extent (partly due to the disabilities, themselves, and partly due to structural/societal ableism), it’s very important to me to be “counted.” For the same reason, I often feel uncomfortable when I hear that someone is representing me. I wonder how much these other occupiers really are representing my interests. Do they know what it’s like to live in a society where they are considered by many to be disposable — where, when someone with a disability is killed by their parent or caretaker, it’s considered justifiable, a mercy killing? Where their lives are viewed as a tragedy or a “human interest story” of inspiration?

Other Posts Pertaining to Disability and Occupy

I’m running out of time, space, and energy, so here are more links, all from Occupy at Home (#oah), which hopefully speak for themselves!

Thank you so much to everyone who contributed links for this blog carnival. Thank YOU for reading this. Please go to the posts, read, be enlightened, and give the bloggers some love in the comments section.

- Sharon, the muse of Gadget, and Barnum, SDiT (currently occupying his crate)

Disability Blog Carnival Call for Submissions: Disability & Occupy!

**UPDATE: Disability Blog Carnival #79 is now up! Lots of great links and blurbs on Occupy/#ows and disability. Please check it out!**

I’m very excited to be hosting the Disability Blog Carnival for December. This will be my first time hosting this carnival, though I have participated in it many times. It is one of my favorites!

Disability Blog Carnival logo by Ryn, featuring a black-and-white photograph of a man and a boy. The man is in uniform and holding crutches; he is apparently an amputee; the boy is holding onto one of the crutches as a child might hold an adult's hand; the two are photographed from behind, and we see beyond them a seashore and a suspension.bridge

Disability Blog Carnival Badge

Since there is so much going on in the world of Occupy and disability, the theme for this edition will be “Occupy.” You’re invited to write a new post based on this call for contributions or to send a link to a post you’ve already published that relates to this theme.

Here are some potential questions to get your mind whirring on this topic. These are just ideas; however, anything you want to write about Occupy that relates to disability is welcome!

  • Are you involved in any way in Occupy? What draws you to the movement or repels/alienates you (or both)?
  • Do your disabilities interfere with your ability to participate?
  • Have you been involved, or attempted to be involved, in Occupy but been thwarted by inaccessibility, ableism, or audism?
  • Do you think Occupy has a place for Deaf people and people with disabilities in general or you in particular?
  • What do you think of media representations of people with disabilities and/or Deaf people in the Occupy movement?
  • Do you think Deaf- or disability-related issues are being addressed by those in Occupy?
  • What disability-related issue or issues do you think (or hope) the Occupy movement could get behind?
  • How do you feel about the term “Occupy”? Do you use “Decolonize,” or another term?
  • How do you feel the movement is doing with issues of intersectionality, such as race, disability, gender, and other members of the marginalized 99 percent? Where do people with disabilities rank among the 99 percent?
  • Have you started or joined a disability-specific Occupy organization or group? Why? What are your goals?
  • Are you a nondisabled Occupy activist or ally dealing with disability or access in some way?

Or anything else relating to the Occupy movement and disability. I’m wide open!

I’m happy to accept vlogs, as well as text blogs, as long as a captioned version and a transcript are also provided. If you want information on how to caption or transcribe your video, please contact me.

It would be great to see some new bloggers join in. The Disability Blog Carnival has a long and groovy history with many thought-provoking, moving, and/or galvanizing editions. I hope those of you who have participated before will do so again, and I hope those who have not taken part will be moved to do so this time.

As always, I encourage — but do not require! — those who submit links to make their blogs as accessible as possible to people with a wide range of disabilities. I just posted yesterday about how to remove Captcha from your blog if you are using “new Blogger.” You can also find links and info on blog accessibility at the bottom of the Assistance Dog Blog Carnival homepage.

The deadline for submissions is the night of Monday, December 26, midnight-ish of whatever time zone you’re in some time in the near future. It depends when I get the carnival up, but if you want to submit something and it’s not done yet, please do! You can also please contact me to let me know what you’re working on and when you think it might be done.

To submit your link, please comment on this post and include the following:

  • Your name (as you want it to appear)
  • Your blog’s name
  • The title of your post
  • The link (URL) for your post

I hope to post the carnival on Wednesday, December 28.

I look forward to reading your posts! Please spread the word!

- Sharon, the muse of Gadget, and Barnum, SDiT

What’s in a Name? Lymie, yes. Canary, yes. CFIDSer, yes. Patient, no.

The Patients for a Moment (PFAM) blog carnival goes up this Wednesday (gulp — tomorrow!). This was my call for entries. The submissions so far have been fascinating. You can look forward to a great carnival!

Green and white rectangular badge. On top, "Patients" is written in all capital letters, in Times New Roman font in white on a kelly-green background. Below, on a white background, "for a moment" is written in green, slanted up from lower left to upper right, in a more casual, slightly scrawled font.

Are You a "Patient"?

The “P” Word

Meanwhile, here is my post on the topic I picked (and why I picked it).

PFAM — which has been occurring twice a month for over two years — was my introduction to blog carnivals. The first time I saw the term, “blog carnival,” was in a call for submissions for PFAM. I immediately found out what a blog carnival was and determined to get involved in PFAM. I have written posts for PFAM a couple of times, but I didn’t contribute nearly as often as I’d intended, and until now, I never volunteered to host. This is in contrast to the disability blog carnival, the ChronicBabe carnival, and especially the Assistance Dog Blog Carnival, the latter of which I founded.

Some of my difficulty with PFAM definitely stems from its structure — the tight deadlines* and the requirement of answering a specific question don’t gel well with my physical and cognitive limitations. However, given how often PFAM occurs, how much I enjoy blog carnivals, and the fact that PFAM is a chronic illness carnival, I thought to myself, “What is holding me back from getting more involved with this community?” The reason was staring me in the face: I don’t identify myself as a “patient.”

“Patients” isn’t just the first word of PFAM, it’s also central to its purpose (quoting the carnival’s “about” page):

Patients For A Moment is a patient-centered blog carnival – for, by, or about patients. . . . The goal of the carnival is to “build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients.”

The actual goals and membership of the carnival are quite sympatico with my interests — “build[ing] connections within the community of people who blog about illness, disease, and disability” — and I am familiar with several of PFAM’s contributors. But I couldn’t see my way clear to hosting the carnival unless my topic was to question the use of the term, “patient,” itself.

Some might find my focus on that single word, “patient,” to be nitpicking. Yes, I’m a writer. Yes, words are important to me, but my feelings about being called a “patient” go beyond semantics. I have a visceral reaction, bordering on revulsion, at hearing myself described this way.

To me, the only accurate or appropriate use of “patient” is situational. It is either relational — the person who is one half of the doctor-patient dyad — or it is locational — the person who is in a medical environment (usually a hospital) — receiving care, undergoing tests, or consulting specialists.

However, just as often as I read or hear “patient” used in one of these appropriate contexts, I also see it used as a generic term for a person with a chronic illness, condition, or disability. How I react to this usage is determined by who is using it, and how. Specifically, it makes a difference to me if it’s a mainstream/”nondisabled” person or form of media using it, versus when someone with the disability in question is using it about themselves.

When the Nondisabled World Calls Me a “Patient”

My reaction to nondisabled/healthy people referring to me as a patient is relatively clear-cut. I don’t like it. Almost every magazine, newspaper, or TV program referring to someone with a chronic illness will refer to them as “patients” — if we’re lucky. Usually, along with references to patients, we are also “struck with,” “afflicted with,” or “the victim of” our disease. That last one really highlights the problem with this kind of language: to be a victim means to have been attacked and helpless, as if the disease has some sort of malicious intent, and we have lost all power and control. Such language supports a perception of people with disabling chronic illnesses as pathetic and different. We are not just regular people, living our lives; instead, we have been singled out for attack, poor things. I am one of a massive movement that has been trying to get writers and journalists to use “person first language” for over two decades, with little success.

“Patient” may not technically carry the same weight as “afflicted,” but its usage, its social weight, puts it in the same category as this more obvious “victim” language. To be a patient is to be medicalized and stripped of our identity as people who exist and act outside of medical settings. When I’m blogging about disability or training my service dog or having a phone conversation using a TTY, all of these activities are influenced by my having a disability, but none of them have anything to do with my being a patient. I am not getting medical care as I sit here and type this. I am living my life.

Even when, last night, I used my PICC line — a medical device that was inserted into my arm in an operating room — to infuse an antibiotic prescribed by a doctor, I was not a “patient.” I was and am a person living with Lyme disease, managing and treating my disease. I can blog, eat, train my dog, follow Twitter, watch a movie, and/or talk on the phone while I infuse. I am acting, not being acted upon.

However, when the visiting nurse comes tomorrow to change my dressing, I will be her patient for the half-hour or hour she is here. She will be doing to me — flushing my line, cleaning my arm, putting on a new dressing, asking me questions about my symptoms and functioning — but once she is gone, it’s just me in my home.

I am not the patient, however, of my personal care assistants (PCAs). I decide what needs doing and how it will be done. They are my assistants, not my nurses; therefore, even when they are assisting me to do what I can’t do for myself, I am not their patient or their client. I am their employer.

When People with Chronic Illness Use “Patient”

My feelings are less straightforward when I read articles, posts, fliers, etc., by people with my conditions who refer to themselves/us as “patients.” There are two main reasons why they use this term. One reason is the same reason that journalists do — it’s convenient. Saying “Lyme patients” is much shorter and less awkward than saying “people with Lyme disease.” It’s often used as a way to distinguish the person with the illness from others who might be concerned with the issue, such as “families,” “caregivers,” and “healthcare providers.”

However, there’s another issue at stake for those with my disabilities, in particular. Myalgic encephalopathy (ME), multiple chemical sensitivity (MCS), and Lyme disease all have histories of being treated as “not real” illnesses. We are told that our symptoms are psychosomatic. We are told the illness is a product of our personality or lifestyle. We are told there is no such thing as ME, MCS, or chronic Lyme, and the labels for these diseases carry these messages.

Our diseases are given mocking, belittling names: “Yuppie flu” or “chronic fatigue syndrome” for ME/CFIDS, as if the only symptom of ME/CFIDS is “fatigue.” The chemical industry’s name for MCS is “idiopathic environmental intolerance,” putting the emphasis on the first word — idiopathic — which means “of unknown origin” and removing “chemical” from the name altogether! The Infectious Disease Society of America, which has been prosecuted for conflict of interest in its relationship with the insurance industry, denies that chronic Lyme disease — persistent infection by the bacteria and parasites that cause tick-borne disease — even exists. Instead, anyone who is still sick after a month of Lyme “treatment” is said to have “post-Lyme syndrome,” a psychological response to illness.

In other words, words matter. I didn’t need a study to prove it, but there is one. Several years ago, a study about the impact of the name of CFIDS/ME was conducted. A mixed group of fourth-year medical students and medical residents were each given a case study of someone with ME/CFIDS, including symptoms, history, etc. They were randomly divided into three groups. All got the same case study, but the name of the disease was different for each group. One-third of the participants’ patient was diagnosed with “myalgic encephalopathy/ME,” one-third with “Florence Nightingale disease/FN,” and one-third with “chronic fatigue syndrome/CFS.” Those who received “FN” or “ME” cases believed the severity of the patient’s illness was greater than those who had the “CFS” case study. Further, 67 percent of those with the “CFS” study recommended psychiatric treatment for the patient, versus 53 and 48 percent for FN or ME, respectively.

I didn’t need a study to tell me that the name of my disabling condition is insulting and misleading, because I’ve lived with that perception since 1995. I have likewise lived with doctors and lay people discounting my MCS as psychosomatic, as a form of “hysteria” or paranoia. Again, this didn’t happen in a vacuum. The chemical industry has been actively working to discredit the experiences of people with MCS — often in partnership with federal agencies and the military — for a very long time. They have money on their side.

Then, I got Lyme disease, which I had previously thought was not a “controversial” illness. Once again, money has changed the perception of how this disease is perceived and treated — and therefore how I was perceived and treated (or left untreated). As in the other cases, the name of the disease, “chronic Lyme,” has been dismissed.

Given how much people with my conditions have been derided, denied, and denigrated, it is not surprising that most of the individuals and organizations who advocate for us — who try to raise awareness about the validity and seriousness of our diseases — focus on the potential severity of symptoms and systemic injury, and the medical proof of our illnesses — the brain scans, blood tests, or other objective measures of living with an organic disease. Almost without exception, those who do this work refer to us as “patients” — Lyme patients, ME patients, CFIDS patients.

One exception is advocacy groups and organizations for people with MCS. Some do use the term, “patient,” particularly those in the medical and scientific fields who are concerned with chemical injury and MCS. However, because most with MCS view our condition as having been caused by being poisoned or chemically injured, and our symptoms as the more severe manifestations of poisoning that everyone would have if the dose was sufficient, not all with MCS even consider ourselves “sick.” For many, it is the rest of the world that is poisonous, and we are just the canaries in the coal mine. Others do identify as ill, as patients.

So, when I see “ME patient” or “Lyme patient” on an educational or activist website or blog, I do cringe, but I don’t blame the person who penned the phrase. I think it feeds a need for many of my community to have our real sufferings — particularly our mistreatment at the hands of the medical profession — acknowledged.

Lymie, Canary, PWC

I much prefer, however, the lingo we have developed among ourselves. As with any subculture, we have created our own “in-speak,” which says more — and yet uses fewer words — than the awkward language of the professionals and the pitying, patronizing, or disputing public.

When I first got sick, the terms most used in the MCS and CFIDS/ME community were “EIs” for those with environmental illness, and PWC, which — adopted from the AIDS community’s use of PWA — meant “person with CFIDS.” Over time, those with MCS have mostly switched to calling ourselves canaries or MCSers. “PWC” has fallen out of use, but I don’t know of any neat replacement; sometimes it’s CFIDSer or CFSer or simply “ME.” (As in, “I’m an ME.”) In the Lyme community, there is consensus — we have the delightfully short, descriptive, and playful, “Lymie.” (One Lymie, two Lymies.)

None of this even gets into how I navigate the broader disability community — particularly the disability rights movement arm — using words like “sick,” “ill,” and “disabled,” interchangeably to describe myself. That does not always go over well, let me tell you!

But you all have been patient to read this long, dense post, so before you get sick of the topic, I will end, because five other people with chronic illness (who may or may not identify as patients) will be chiming in on this discussion tomorrow!

- Sharon, the muse of Gadget, and Barnum, SDiT

*Starting in 2012, PFAM will move to a monthly schedule, which will make it slightly more doable for me. However, hosts will still be required to give only 10 to 14 days’ notice for bloggers to write and submit a post on that month’s topic. Lead time is my real stumbling block.

Waspish Wednesday: Please Don’t Comment on My Voice!

This post cross-posted at ChronicBabe.com.

Or, Behavior Modification (Training) Works on People, Too!

I’ve been disabled by chronic fatigue syndrome and multiple chemical sensitivity since 1995. However, when I became infected with Lyme disease and two other tick-borne diseases in 2007, I developed several new symptoms. One of the strangest and most difficult has been intermittent vocal cord apraxia, which means that sometimes I can’t make voluntary sounds, most notably speech.

The amount of voice I have occurs on a spectrum from total inability to speak, to severely affected (like a cerebral palsy accent), to scratchy and hoarse (like laryngitis), to completely normal. Most of the time, my voice slowly improves over the course of a day: upon waking, I can’t make a peep, but by nightfall, I can talk a blue streak. Other times, it’s very sudden: at noon I can’t say a word, but by 1:00, I speak fluently. Conversely, I may be talking fine until a chemical exposure or an exertion (e.g., taking a bath) steals my voice in a flash.

Frequently, when I can’t speak, it’s the sign of a “bad day,” when I’m also immobilized by severe pain and fatigue. However, there are times when I can’t voice, but I’m not feeling worse than normal — as well as days when I can speak, but I feel like hell.

Unfortunately, most use my voice as a barometer. Not only do they assume that if my voice sounds good, I must be feeling good, they also jump to the conclusion that I am recovering or have been cured! Virtually everyone* to whom I say, “Hello,” on the street or the phone, immediately responds with comments like these:

  • “Hey, you’re talking! You must be thrilled!”
  • “Your voice sounds so strong today! You sound really energetic!”
  • “Oh dear, I thought you were getting better. . . .” (This is said with deep disappointment, followed by an awkward pause, then a hurried escape.)

I usually just grit my teeth and change the subject as fast as I can. I understand the drastic changes in how I sound can be confusing, especially to new people in my life, but for people who have experienced the vagaries of my communication issues for years? In those cases, I want to scream, “Shut up about my voice! Just ignore it and treat me like a human, not a symptom! Stop guessing what it ‘means’!”

I don’t scream, especially because I know that these remarks — particularly the “your voice sounds terrific!” variety — are intended as compliments. Nonetheless, at a certain point, I decided to ask people not to start every conversation with a discussion of my voice. I usually say something like, “I know you’re trying to be supportive and encouraging, but I’d really prefer if you didn’t comment on my voice. You see, almost everyone does this, and it gets really tiresome.”

The response is usually a surprised and confused pause, followed by profuse apologies. I interrupt this, too, saying there’s no need to apologize, that they didn’t know, and that it’s just information I’d like them to have for the future. The best response is a “thank you for telling me.” This tells me they have not taken it personally. So far, this strategy is 100 percent effective; if I make this request, it is always honored.

Everyone has their own preferences about whether, how much, or with whom they wish to discuss their health or functioning. I personally restrict such discussions to family, and close friends who are also disabled. I know I’m not alone in my struggle. Like others with disabilities, I’ve had people comment on, and try to judge the state of my health based on, my use or non-use of various assistive devices (wheelchair, oxygen, filter mask, service dog) or my behavior (standing, sending an email, writing a post, leaving the house).

My advice to chronic babes who’d like others to ignore perceived clues to the vagaries of your condition? Tell them! My advice to those who I speak to on the phone or on the street? Ask about my dog training, writing, or opinion on the weather — just don’t mention my voice!

*The exception to this are those who see me, day in and out, with and without voice, and are used to its vagaries, such as my partner, my personal care assistants, and a small number of friends who are also disabled.

Round-Up: Assistance Dog News, Notes, Updates

Today is a bit of a roundup. Too much going on. Can’t devote a post to any of these topics alone.

First of all, to all my femme sisters, happy International Femme Appreciation Day! I wanted to do a post on this topic, but I couldn’t manage. So, if you want to read some good, very diverse writing on femme life and identity, including several essays that deal with disability in some way (one of which is by me, and another of which is by Peggy Munson, who also has CFIDS, MCS, and Lyme), I suggest the two-volume set Visible: A Femmethology.

Of course, in the comments, feel free to tell me how much you appreciate me, as a fabulous femme dyke. Just an idea. (Note: You can appreciate me even though I didn’t manage to publish this till July 3, instead of July 2.)

And now, in assistance dog news.

First, the less cheery news items. . . .

Goodbye to an American hero, Roselle of GDB. Sadly, Roselle, the guide dog who led her partner out of the World Trade Center shortly before it collapsed on September 11, 2001, died last week at the age of 13. There is a book coming out about her soon. Here’s a news story on Roselle’s passing.

Restaurant denies access because of “too many” service dogs. Recently, thirteen people who had reservations for dinner at 5:00 PM at a Dedham, Mass., restaurant were turned away, because six in the party are blind and had their guide dogs with them. When the store management refused to seat the group, they called the Dedham police. (BTW, Dedham is not too far from my hometown.) The police officer refused to uphold the law, kept on saying how he has a daughter who uses a wheelchair, so he understands, but they are being confrontational and should leave. (With allies like that, who needs, um, allies?) He also did helpful things like, when one of the blind people asked  for his badge number, he held up his shield to show them. Great!. Here is one of many news stories on it. You can also find it on Twitter, with the hashtag #bambooadafail

In happier assistance dog news. . . .

The International Association of Assistance Dog Partners (IAADP) now has a Facebook fan page! You can visit their fan page here. They also still have their regular, very informative website, that they’ve had for years, which you can visit here.

International Assistance Dog Week is just a month away! It takes place this year from August 7 through August 13. Assistance dog partners, trainers, puppy raisers, and others are encouraged to do something fun and/or educational to raise awareness about, and good will towards, assistance dogs and their partners. I don’t know yet what I’ll do for it. I’m pondering. You can get materials and ideas from the official Assistance Dog Week website, and there is also a Facebook fan page to visit for ideas and community.

If your “Please Don’t Pet Me, I’m Working” patches are not effective enough, there are some good ideas at the Please Don’t Pet Me website and especially at their Facebook page. I particularly like some of the wording on this placard that a SD partner made and attached to her dog’s mobility harness handle. It’s very eye-catching, with lots of colors, and the way it’s designed. It says, “Do not pet. Do not distract. Mobility & Medical Alert Service dog. Questions stress person ~ has brain injury ~ please stop.” Amen to that.

And lastly, remember that the fourth Assistance Dog Blog Carnival is coming up! The July ADBC is being hosted by the wonderful Kali at Brilliant Mind Broken Body. The theme is “Differences.” Make a difference in the carnival and write and submit a blog post!

Must. Train. Dog.

G’night.

- Sharon, the muse of Gadget, and Barnum, SDiT!


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