Archive for the 'Activism' 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

Update: Free Empathy Call, Online Chat & Webcam Chat Details – Oct. 1&2

This is an update to my previous post. If you want to read the details of my personal experience with the call last year, check it out.

A globe brightly covered with the colorful flags of all nations and people that look like paper dolls standing in a circle around the globe holding hands. The 12 people are each a different shade of the rainbow, from red to purple.

Global Connection

However, if you simply want to learn the nitty-gritty of how to attend the call or one of the online events for the United Nation’s International Day of Nonviolence in honor of Gandhi’s birthday, here it is:

In case this was clear before, this is a FREE call. Twenty-four hours of continuous empathy are available to give, receive, or witness. If you would enjoy making a small donation in appreciation of our organizing efforts, we will happily accept, but the point of the call is to make it available to everyone (as someone said to me recently) “as a love offering.” That’s what it is! Free love! It’s priceless. <wink, wink>

Every two hours a different facilitator, or team of facilitators, will be hosting — bringing their own perspectives and experiences to the call. Note: For technical reasons the 24-hour period has been broken up into six (6) four-hour “sessions,” but you can call in (or leave) any time during any “session.”

The call STARTS Monday, Oct. 1 at 6:00 PM EDT

and

ENDS Tuesday, Oct. 2 at 6:00 PM EDT.

(If you’re not in the Eastern US, you can find out when the calls are in YOUR time zone using this time zone converter. If you are more visually oriented, here’s a map of the world’s time zones.)

You do need to register in order to get a call-in number and PIN. Find all the details and register here.

Secondly, the online chat is set up! It will go from noon – 2:00 PM US Eastern Daylight Time (9AM – 11AM PDT or 16:00-18:00 GMT). Click here to enter the chat room. Have questions about the chat? Contact me.

Thirdly, someone else has also now scheduled a face-to-face empathy by webcam for October 2, from 1:00 AM to 3:00 AM US Eastern Time (October 1 from 10 PM – 12 AM US PDT or 05:00-07:00 GMT). To register for empathy by webcam, enter your name and email address at http://www.PANinA.org/Empathy.

If you know someone who doesn’t have web access who would like to register for the calls, please contact me and I’ll get in touch with them by phone.

P.S. It just so happens that Marlena, my wonderful teacher, will be offering a new series of her classes in October. “Healing Listening, Healing Talk” is the name of her classes in Nonviolent Communication for people with disabilities and chronic illness. If you’d like info about the classes, contact me, and I’ll email it to you.

Hope to “see” you on a call or chat room!

– Sharon and Barnum, SD/SDiT who is sooo eager to work because we have not been doing enough training for his taste!

P.S. Yes, I will return to dog blogging again after this!

UPDATE: A Call Changed My Life: Global Empathy Call Oct 1 & 2

This has been a busy and rather extraordinary week for me, and one which I hope will lead to something enjoyable — maybe even wondrous? — for you.

The Story Begins One Year Ago

Last year at this time I was consumed by grief over Gadget’s and Norm’s deaths as well as by the multiple other losses I’d experienced in close proximity: the loss of feeling safe in my home after a natural disaster; new functional limitations in every aspect of my life caused by Lyme disease; and the loss of several very important friendships. I was in a constant state of pained numbness. I was angry a LOT. Underscoring everything was my unrelenting self-loathing and self-judgments, which I didn’t even realize were there.

When I found out, via a friend who was also studying Nonviolent Communication (NVC), that there was a marathon global empathy call in honor of Gandhi’s birthday (October 2) and the UN International Day of Nonviolence, I was a little dubious. I didn’t get it — what would people DO? Would I have to interact with a bunch of strangers who would not “get” my life, with all its disability-related weirdness, loss, isolation, and complexity?

But the call was free, and I heard from some friends that it was really great, so I figured I had nothing to lose. I could call in and just see what it was like, and if I didn’t enjoy it, I’d just hang up. At first, I just listened. I was amazed at the courageous vulnerability of those seeking empathy and in awe of the skill — combined with a depth of compassion and empathy I’d never witnessed before — of the facilitators and participants who were so interested in supporting other participants, regardless of the topic or the person.

A globe brightly covered with the colorful flags of all nations and people that look like paper dolls standing in a circle around the globe holding hands. The 12 people are each a different shade of the rainbow, from red to purple.

Global Connection

I started calling in as often as I could, and each time I felt a stronger and stronger desire to request empathy, even though I felt very scared and nervous. I felt comfortable with my little knot of NVC students and teacher who also had chronic illnesses and disabilities, but this number of unknown, mysterious strangers on the line, what would they think of me? Maybe they would be as disgusted with me as I was with myself. After all, hadn’t the friends who left my life told me I was a selfish, horrible person, not worthy of attention? (That was what I believed back then; now I know that that is probably not at all what they thought.)

I Finally Spoke Up

Eventually, standing in the stream of empathy flowing around me, I wanted to drink of that water, too. I really felt like I would implode if I didn’t get some empathy. I made a request for time on the call. Having held in my grief for so long — years! — as soon as I started talking, overcome by anxiety and sadness, I just sobbed, all my grief just pouring out of me. It was hard even to talk.

Honestly, I don’t remember a lot of what I or others said. I remember a few words and phrases here and there, and certain names and voices. But mostly, what I was completely astonished to learn — and what I didn’t believe the first times people said it — was how much they were moved by my call, how much it had given to them, that my sharing my pain was a gift. I actually stopped someone to ask her “Why?” Because I couldn’t believe it. It happened to be Mair Alight (one of the organizers of last year’s call and now one of my NVC teachers) who answered me. I don’t remember what she said, but she was clearly speaking the truth. She was not being “nice” and lying or being pitying or patronizing. She was genuinely connecting with me, and that connection was nourishing to her. That shifted something large inside me. I always remembered her name and voice after that.

When I first started speaking (and crying), I was cringing, waiting for the silence of repulsion or the polite words of distance, letting me know that really, it was not appropriate to just sob on the phone to a bunch of people who don’t know you. But I got the opposite. I got love and tenderness. From strangers.

That was also the first time I had a chance for a communal grieving process for Gadget and Norm. I felt held and cared for like I never had been before. To experience such deep compassion from strangers around the world was transformative. I left the call raw and open and exhausted, but also with a sense of a heavy weight on my heart having been lifted just a bit. The wound of unattended grief that had been festering for two years was finally able to begin healing.

Hope

I don’t usually use language like this, but that call for me was a rebirth. It gave me all sorts of hope. Hope that I could have friendships and close connections with other people again. Hope that maybe there was good in me, that I had something to contribute to the world. Hope for things I can’t even define or name.

Several people expressed concern about my needing much more empathy than I was getting in daily life and suggested other free NVC phone classes and practice groups, which I scribbled down on bits of paper. With these leads, I threw myself into every NVC endeavor I was able to. For a while I had several embarrassing interactions where, when I met a new NVC person in a phone practice group, they would tell me they recognized me from the call. But they all seemed to view that as a positive thing, and more than one person told me that my call had been the one that had moved them the most or been one of the most meaningful.

The long-term effects of that call have been amazing — not just that one catharsis, but the connections to other people and groups have made me much more attuned to my and others’ feelings and much more aware of what my underlying needs are and how to fill them. One unexpected result is that I am a much happier person now, more compassionate toward myself and others, and much, much less angry. (Funny side note: I said to Betsy a couple of weeks ago that I realized I very rarely got angry anymore, and that now I was aware that I used to be angry constantly. I said, “Do I seem less angry to you?” And she widened her eyes and said, “Yes!” Nodding her head so emphatically that it was comical.)

I Have Come Full Circle

Ever since the call ended last year, I have been looking forward to this year’s. Last week I emailed Mair to ask her for details on this year’s event. She said it had not been planned; nobody had had the time and energy to take it on. However, she said, if I could help organize it, we could do it together.

I thought about it and decided I couldn’t NOT volunteer because otherwise the call wouldn’t happen, and I wanted it to happen so badly. I thought there would be a few of us organizing it, but nope! It’s just me and Mair, and people were referring to me as the “lead organizer”! How did that happen? I never dreamed I could or would be doing this, but the call is scheduled, facilitators are volunteering, and I very much hope you will join me!

You don’t have to know any NVC to attend and enjoy this event; all human beings are very welcome! (Of course, dogs are welcome to listen in, too.)

And because of my own disabilities and that of many of my friends, I have also added an online, all-text chat to the schedule, which I will be co-hosting. All are welcome to the online chat, just like the calls. You can do both!

Here are the details of the event: This is a free global empathy call that will span 24 hours, facilitated by teachers, practitioners, and enthusiasts of NVC. The intention of this call is to experience community through empathy. You can ask to receive empathy or offer to give empathy or just listen and witness the flow of empathy.

Every two hours a different facilitator, or team of facilitators, will be hosting — bringing their own perspectives and experiences to the call. Note: For technical reasons the 24-hour period has been broken up into six (6) four-hour “sessions,” but you can call in (or leave) any time during any “session.”

The call will START Monday, Oct. 1 at 6:00 PM EDT

and

END Tuesday, Oct. 2 at 6:00 PM EDT.

The timeline chosen means that in every part of the world, some of the call will occur on October 2, the United Nations International Day of Nonviolence and Gandhi’s birthday.

(If you’re not in the Eastern US, you can find out when the calls are in YOUR time zone using this time zone converter. If you are more visually oriented, here’s a map of the world’s time zones.)

Click here to register for the call!

Plus the Online Chat!

Of course, given my own intermittent speech disability and the many Deaf and hard of hearing people I’ve had in my life, I am aware that conference calls are not always the most accessible forum for everyone (although I have used relay in NVC classes and practice groups). I know of people who prefer text to spoken communication due to seizure disorders and autism, as well. So, I really wanted to have one “call” be online. I’m excited and nervous because I will be co-hosting, and I don’t yet know who will be my co-host(s), but here is the info:

A two-hour live online empathy chat

on Oct. 2, from 12:00-2:00 PM EDT.

(Again you can find out when the chat is in YOUR time zone using this time zone converter.)

You do not have to have a communication disability to attend the chat! We welcome anyone who would enjoy giving, receiving, or witnessing empathy in an online environment or who is just curious what it’s about. To join the chat, click here or go to http://us7.chatzy.com/76139319355482

Please spread the word about the calls and the chat!

**NEW: Another online option has been added! There will be a face-to-face empathy by webcam on October 1 from 10:00 PM to midnight PDT. To register, enter your name and email address at http://www.PANinA.org/Empathy.

Will You Join Me?

You do need to register for these events — that is how you get the call in number and PIN code for the calls (or the URL for the online events) — but you can drop in whenever you want, or decide not to go at all!

Please note that this is a free call. When it asks you for the amount you’re paying, just put in “0.” If you would like to make a donation up to $24 in appreciation of our work organizing this event, we would certainly appreciate it, but our deepest wish is for the presence and participation of everyone who wants to come!

When I took this project on, it was only with a desire for the event to happen. I knew I’d be using a lot of “spoons” on this that would leave little or no time for other activities, including training Barnum and the bits and pieces of writing and editing I’m trying to do for pay again.

Click here to learn more or register!*

* 1. If using the computer is difficult for you or for a friend who is interested, please contact me, and I will be delighted to register you or them!

* 2. If, for some reason, you have trouble registering (if you don’t get your call-in number and PIN), please contact me.

Getting the Word Out

In all honesty, I am trying everything I can think of to get the word out, and I don’t know if it’s having any effect, so I would appreciate it very, very much if you would post the link to this event on Facebook, Twitter, Tumblr, Google+ and share with friends, etc.! Or reblog or retweet this blog post. Or tell someone in your life.

I very much hope this year’s Global Empathy Call will be as rewarding for all involved — hopefully including you — as last year’s was for me.

Love, Sharon (and Barnum, who does not understand the fascination of the black box on the overbed, the clicky thing in the lap, or the wire thing on the head that the sounds come from)

Summer of My Green Frog

Or, Kermit Sang the Truth, Y’all

I know normally this is a dog blog, but today it is a frog blog because I want to tell the story of a very special frog I had a connection with this summer. I also thought I’d share how I, and all people with MCS (and all living beings for that matter), have an important connection to frogs.

But first, the story.

We have had quite a number of frogs in the gravel around the house this summer. Most of them were leopard frogs — either Northern Leopard Frogs or Pickerel Frogs — but this is the story of one special frog who was not a leopard frog.

All around my house is gravel. I am severely allergic to mold, which is why I live in a house with no basement and gravel around it and lots of sun and air. The gravel supports good water drainage and prevents vegetation from growing near the house, which otherwise can be a source of wood-boring insects, mold, and other Things We Don’t Like. For some reason, frogs and toads really seem to like the gravel next to the house.

Every evening, when I’d take Barnum out, a slew of leopard frogs would leap under the ramp toward the house to escape our scary, big, noisy mammalian selves. When the weather got wet for a brief period, I asked people who walked Barnum to rinse off his feet in a basin before bringing him in so he wouldn’t get my bed all muddy or sandy. One day, the basin was left outside next to the ramp and then we had a series of thunderstorms. The basin filled up with water.

The day after the rains had ended, there was a frog in the basin. It was a little frog with a green head and a brown body. It was just hanging out, its head out of the water, and its body in the water, chillin’….

I thought it was fine, but one of my PCAs who cares about all living creatures, even wasps and yellow jackets and ants, was concerned that maybe the frog was trapped and couldn’t get out. So I put my hand under its legs and it leaped away, totally fine.

From then on we saw the frog in the basin every day. Usually it would hang out near the side, face out, body in. Occasionally, it would sit on the edge of the basin.

One morning, a large rock had appeared in the middle of the basin. I knew right away that my tender-hearted PCA had provided the rock for the frog so that it would have a place to rest safely in the water.

A rectangular tan basin surrounded by gray gravel. The basin is full of water and has some algae along the bottom. In the middle is a large brown rock, the top of which pokes out of the water. A little dark spot on the rock near where it pokes out of the water is the frog.

The perfect frog rock in the frog basin on the frog gravel.

The frog LOVED that rock. The frog spent all its time on the rock, which it blended in with so well that if you didn’t KNOW there was a frog living there, you would just walk on by. If you looked, you could see the eyes sticking out where the frog was pretending to be a brown rock.

Everyone was very fond of the frog. We always looked for it when we went in or out of the house and reported on what it was doing. It was never around at night. It spent its nights elsewhere, perhaps at a frog nightclub, drinking grasshoppers. And it spent its day in the basin/homemade pond on its rock. My tender-hearted PCA was concerned that the frog might be lonely or hungry because she never saw it socializing with other frogs or hunting anything. We kind of made fun of her a little bit about this. (My PCA, I mean, not the frog. We would never tease the frog; that would be cruel.)

I looked up the frog in my Audubon Field Guide. It looked like a Northern Green Frog, but was much smaller than the measurement given. I looked them up online and found out that their size can vary quite a bit. This frog was about one-and-a-half inches long. I decided it was likely either a juvenile frog or just a petite, svelte frog.

Northern Green Frog sitting on a lily pad.

Ha! This Northern Green Frog only *wishes* she had an awesome rock in a basin instead of this pathetic lily pad in a natural environment. Poser.

I also learned that male Northern Green Frogs have yellow throats, whereas the females’ throats are light tan. I tried to get a look at our frog’s throat, but it was difficult to tell because the frog was generally partly submerged (and on the rock) and the basin is a sort of yellowish-tan; I couldn’t tell if it was reflecting on its throat. But eventually I decided it seemed like it had a yellow throat. For quite some time we agreed the frog should have a name, but I didn’t want to name it until I knew its sex. (I know; I’m terribly old-fashioned, hung up on these binary gender distinctions in amphibians.)

Close-up of the frog, head-on. The frog is sitting on its rock with its body in the water and its head sticking out.

“I’m not here. I’m a rock.”

So, since it was a Green Frog, I wanted a name that started with “G,” and when I decided it was a boy frog, I chose the name Gordon Webfoot. I got some pictures of Gordon to post on my blog. We sometimes added water if it seemed like the basin was getting low, and when it got really gross, with lots of dead bugs and algae and leaves, we’d clean it out and put in fresh water. Everyone was happy.

One day, I managed to get a really close look at Gordon and realized that his throat was tan, not yellow, which meant Gordon was a female frog. (She had a bright yellow stripe along her jaw line on each side, and that had thrown me off.) So I changed her name to Gordana (pronounced as “Jordana”) Webfoot.

Overhead close-up of the frog on the rock. Her head is clearly visible sticking out of the clear water around her, even though her lower body, under the water, blends in with the mottled brown of the rock she's sitting on.

Gordana strikes a pose. She’s a friggin frogstar!

She was a confident, mellow frog. I could go rolling by in my big, noisy powerchair on the metal ramp, right next to her basin, and she didn’t move a muscle. I could take close-up photos of her, and she didn’t care. I introduced her to my parents. My mom thought she was cute. My dad said she was too small to be a real frog, but size isn’t everything. She had heart. Barnum mostly ignored her, except one time when he got up really close to sniff her; she jumped off her rock and landed under the ramp. But later she was back again. Gordana was a very cool frog.

The weeks went by. My PCA became concerned about fall coming. What would happen to Gordana? She suggested I look into a terrarium. I said absolutely not. She was a wild frog — born free and living free — and I would not subject her to a life of captivity. I had visions of Gordana returning each summer to her basin.

Then one morning, my PCA — Gordana’s fairy godmother — said that Gordana was not in her basin. She also said that a garter snake had been seen leaving the area. “But snakes don’t eat frogs, do they?” She said.

I said that yes, frogs are a favorite of snakes. (I know what garter snakes eat because I used to have one as a pet. Her name was Falstaff. That’s a story for another time.)

She said, “But it was a really small snake. I don’t think it could eat an entire frog.”

I said that snakes’ jaws can open really wide, and it would be no problem at all to swallow a small frog like Gordana. But I really hoped she was wrong. I hoped Gordana would come back. I went out to look for her from time to time.

For three days, we all looked for our froggy friend. We never saw her again. We were all sad. On the fourth day, we washed and emptied the basin and brought it inside. We miss Gordana Webfoot.

The end. . . ?

No! Wait! There’s more!

Don’t let Gordana Webfoot have died in vain! Were you deeply moved by the bond between a 40-something woman and her frog? Or even mildly amused? Would you like to give back to the frog community? Or would you like to, you know, not have the planet die? Then you want to know about Save the Frogs! — America’s* First and Only Public Charity Dedicated to Amphibian Preservation!

Logo for Save the Frogs! Black rectangle with the words Save the Frogs! in bright green and orange. There is a photo of an actual bright green frog with huge bulging orange eyes and a yellow tongue sticking out sitting on the ess and exclamation point. Underneath it says savethefrogs.com.

You can help save the frogs!

Save the Frogs! is an awesome organization. They have a really fun, colorful, engaging website. They save amphibian habitat through education, awareness-raising, and direct action, like pressuring public officials not to destroy the habitat of endangered amphibians in their areas. They organize and advocate against pesticides and other chemicals that harm frogs. They sponsor fun events like Save the Frog Day, the Frog Art Contest and Show, Drumming for the Frogs, eco-tourism to help frogs in other parts of the world, information on how to build your own frog pond, and the annual Frog Poetry Contest. The have the frogblog and provide Cool Frog Facts. They are all about the frogs, dude!

A psychedelic ad for the Save the Frogs! Art Contest. All the letters and the background and the frog are in super bright colors, mostly purples, greens, and yellows. At the bottom it says savethefrogs.com/art

FrogArt!

What do frogs have to do with people with MCS? Or people at all, for that matter?

I’m so glad you asked! People with MCS are often referred to as “the canaries in the coal mine.” Many MCSers call themselves “Canaries.” Canaries were brought down into coal mines because they were more sensitive to poisonous fumes than people. If the canary suddenly keeled over, the miners knew that the air was full of dangerous fumes and got the heck out. People with MCS react to poisons most people aren’t aware of; we are the warning bell of what is harming us all.

But frogs are the REAL canaries. Biologists call them “bioindicators.” From the Save the Frogs! website:

Most frogs require suitable habitat in both the terrestrial and aquatic environments, and have permeable skin that can easily absorb toxic chemicals. These traits make frogs especially susceptible to environmental disturbances, and thus frogs are considered accurate indicators of environmental stress: the health of frogs is thought to be indicative of the health of the biosphere as a whole. Frogs have survived in more or less their current form for 250 million years, having survived countless ice ages, asteroid crashes, and other environmental disturbances, yet now one-third of amphibian species are on the verge of extinction. This should serve as an alarm call to humans that something is drastically wrong in the environment.

That’s right, according to Dr. Kerry Kriger, founder of Save the Frogs!, “Amphibians are without a doubt the most endangered group of animals on the planet. There are six major factors negatively affecting amphibians, and all are due to human activity.” (Wonder what they are? Find out here.)

Yes, Gordana Webfoot is gone. But it is never too late to be inspired by her memory. Please check out Save the Frogs! And if you’re so inclined, make a donation in any amount to Save the Frogs! in Gordana’s memory.

Ribbit!

– Sharon, the muses of Gadget and Gordana, and Barnum, service frog dog

*Although Save the Frogs works on frog preservation all over the world!

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

Just Like Mall Wart, except…. [Updated]

Bumper sticker with dark blue letters on white background, type face the same as Wal-Mart's. Says Mall Wart, Your source for cheap plastic crap.

It's a good beginning.

My PCA used to have many excellent, snark-intensive bumper stickers on her truck. This was one of my favorites. However, I don’t think it’s entirely fair. It’s a little misleading.

It really should say, “Mall-Wart: Your source for cheap plastic crap, which also

  • Uses slave labor in other countries for outsourced goods
  • Violates the Clean Water Act in multiple US states and otherwise engages in practices egregiously harmful to the environment and dangerous to the consumer
  • Exploits its workers
  • Busts unions
  • Systematically and intentionally puts small businesses out of work
  • Participate in racist employment practices
  • Has been sued repeatedly for Americans with Disabilities Act violations, such as not allowing people with disabilities accompanied by assistance dogs into their stores
  • Is owned by people who each make over $18 billion annually, lobby conservative elected officials, but donate less than one percent of their income to charity.” (By comparison, Bill Gates donates over 50 percent of his income to charity.)

But that would make for a really, really long bumper sticker, don’tcha think?

Anyway, why, you may wonder, am I writing a totally random post about Wal-Mart? Well, partly it’s because it’s evil, and I like to raise awareness about the depth, breadth, and sprawl of their evilness. You’d be hard-pressed to find any form of despicable activity — human rights abuses, animal rights abuses, environmental destruction, trade practices bad for US interests, etc. — that they don’t participate in. Where am I getting these facts? From this extremely long list of facts and their sources about Wal-Mart’s illegal and unethical practices. (Except for the ADA and service dog stuff; I just know about that from my involvement with disability rights activism.)

You can learn all this and more, in entertaining, heart-breaking detail, by watching the documentary: Wal-Mart: The High Cost of Low Price on a DVD that you rent or purchase, or for free online!

So, back to the reason I’m writing this now. The reason is that I have been promoting the auction that I have helped organize, Marlena’s Teaching Fund, and it’s down to its last 30 hours or so. We are having a big sale to try to get as much donated as possible when this comes down tomorrow at midnight.

Thus, I have slashed prices! I have encouraged people to spend! And bargain-hunt! And obtain!

I have been relentlessly posting on Facebook and Tweet-spamming, such that I think everyone will unfollow or unfriend or block me. And I’m talking about how many, many items and services are still available, and how “there’s something for everyone,” that I was thinking, “My God, I’ve turned into some sort of Mall-Wart-esque monster!” Aieee!

But then, I remembered, no.

For one thing, this little shindig is actually an offering of gifts by people who want to contribute to someone’s (or a group of someones’) well-being. And much of this stuff is stuff that people have but don’t want or need, so it’s being repurposed, recycled, not going into the landfill. And a lot of this stuff was handcrafted, by people who did it with love, not sweatshop labor.

Actually, I have learned a lot from this experience. I have gotten the opportunity to connect with and meet some really awesome people. I think it has served many useful purposes and contributed to meeting the needs of many people. So, overall, I’m very glad of my involvement.

I am not Mall-Wart. I am still me. And hopefully Betsy will help me create a spreadsheet so my head doesn’t explode when I try to match item donors, winner bidders, mailing addresses, donations made or to be expected, etc., when this all comes down tomorrow. (Or maybe I’ll just crawl into Barnum’s crate and put my head in my arms and rock myself and hope that people will telepathically figure out who to contact and what to mail, etc.)

Or maybe one of you reading this is good at spreadsheets and has some spare time in the next day or two? Heh heh heh heeeeeeeeeeeee. . . ?

So, I guess this is a request for help, which really was not my intention when I started this post, but there it is — life takes you in unexpected directions, and for me, these directions are often found while blogging. My requests:

1. If you have bid on the auction and won one or more items, starting Sunday night or Monday morning, please check your email (including spam folder) and/or your blog comments — or whatever you gave for your contact info — or contact me yourself, because I have already not heard from two people I’ve tried to contact where there were questions about their bidding, and I feel quite anxious about not being able to connect to everyone who bid.

2. If you know of anyone who has bid, please pass along the note above, in case you have more reachable contact info for them than I do.

3. If you haven’t bid on anything, go check it out. There really is some amazingly cool stuff there, and some unbelievable bargains. I really did go and mark everything down that had not yet been bid on.

4. If you bid on stuff, check to see if you were outbid. If you were, and you want whatever that stuff was, bid it up.

5. If you are in any way able to help me with the adding up of sums or creation of spreadsheets or email of people who donated items or made winning bids, please contact me! (If you know my phone number or email, use that. Otherwise you can use this private form.)

Finally, to paraphrase Trillian from that most remarkable book, The Hitchikers Guide to the Galaxy, “[This blog] will be restoring normality as soon as we are sure what is normal anyway. Thank you.”

– Sharon, the muse of Gadget, and Barnum, SD/SDiT (We have some cool training stories to share; I just haven’t yet finished any of the blogs I’ve started recently.)

UPDATE: The kind and talented Kat of Join the Club! created a google docs form/database/embeddable thingy which we think I’ll be able to have winning bidders fill out with their contact info. This will make my job MUCH easier (if it works). So, some help has already been given, and I am very grateful!


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