This post is for the February disability blog carnival at Through Myself and Back Again. The theme is “participation.” The question? What do we, as disabled people, participate in?
As so often happens with carnival posts, I had an idea of what I wanted to write about, then fate intervened and changed it, and then changed it again. In some ways, this is a metaphor for how, when, and what I choose to participate in. So often, my choices are limited, and I veer off course again and again to attempt what is possible — which is not always what is most desirable or advisable.
My main activities — service dog training, writing/blogging, and disability rights activism — sometimes come together and weave a strong, beautiful cord, a cord I have used to hoist up my dragging sense of self.
Sometimes, however, they tangle into a knot — a knot that leaves me feeling a bit strangled.
As a person disabled by chronic illness, I spend a considerable amount of time in “fake-it-till-you-make-it” mode, by which I mean that I try to continue with my life and activities, as much as possible, even when I feel like total crap.
Sometimes, this is the right strategy. If I always waited until I felt truly well enough to do anything, I would almost never do a single, damn thing. I spent almost three years recently being too sick to do more than survive, and it’s a really boring and exhausting way to live. I don’t want to go back to that!
On the other hand, my disabilities require Kafkaesque decision-making. In almost every circumstance, what’s good for my mental health is bad for my physical health, and vice-versa. This is because my life revolves around avoiding chemical exposures and physical, mental, or emotional exertions.
For example, it would be good for me to not be so severely socially isolated — to be able to leave the house and interact with people. However, because I have MCS, if I attempt this, I will, at minimum, be ill for a few hours or days afterward. On the scarier end of the spectrum, I could suffer permanent organ damage and/or a progression of my illness.
On the ME/CFS/CFIDS and chronic Lyme disease fronts, I have to avoid any activity which uses too much energy. On some days, “too much energy” is a lot roomier than others. Some days, I can work on a blog, fit in three short training sessions, and move about my house. Or have a long phone conversation. Or watch a movie on my computer. These are the “good days.” On other days, such as a stuck day, speaking, training, writing, listening — even if all done while lying in bed — are beyond too much. Getting to and from the bathroom is too much. Which means that just existing, on these days, I am beyond my “energy envelope.”
However, writing makes me feel alive. When I write, I feel like my truest self. I have writing running through my brain all the time (unless I’m even too sick for that, which did happen for the first few years I had Lyme), and it has been one of my biggest frustrations that my body can’t release what my brain is holding.
Training my own service dog (SD) is an especially paradoxical exercise in this ping-pong-like existence. Training combines some of my favorite activities: thinking, communicating, teaching, learning, working toward a goal. It’s a way that Barnum and I can bond and both feel good.
Further, I’m putting in all this effort now so that in the future, my life will be easier. When Barnum is trained, he will be saving me energy that I can therefore put toward other activities, or just toward survival/rest. This is a powerful motivator.
Meanwhile, training my own SD is an enormous energy drain, and I pay for it physically and emotionally, no matter how much I (mostly) enjoy the process. Perhaps the hardest part is keeping my desperation out of the picture, making sure that I don’t put too much pressure on Barnum or myself to learn too much, too fast.
This is where having other activities in my life really counts. It helps balance me. When all I was doing, thinking, dreaming was trainging-Barnum-training-Barnum-training-Barnum, it was too stressful for both of us. Blogging has been a terrific way to process the training experience, while also getting a break from training.
And yet. . . .
Blogging about training, well, that’s a special kind of torture. As I wrote in my previous post, I am constantly inspired and hungry to write about thrilling, proud training moments, but I’m almost always too sick to write and train. Which becomes a weird irony: I’m blogging about training, but in order to blog, I have to use the time and energy I need for training. To train means to severely limit my blogging.
Okay bloggers, dog trainers, and people who participate in any other activity who are not chronically ill: If you read the sentence above, and you thought, “I understand, because I go through that, too. When I train/blog/work, it means I can’t spend as much time training/blogging/working/other activity, either. Everyone has limits.”
Not so much. Yes, everyone has limits, but the limits of a non-ill person are very different from someone with chronic, severe exhaustion and pain, not to mention cognitive impairment. For example, I have been working on this blog for well over a week. I do it in bits and snatches when my mind is clear enough and my body allows it.
Right now (Sunday), I am choosing to write, even though doing so is making my heart race from the exertion, which I know means that tomorrow I will probably be so sick I may not be able to move, literally. It means I have not spent one moment training Barnum today.
It means that I am trying to keep my whole body still against the pillows and bed except the fingers that are typing because otherwise the pain would take over and make it impossible to move. It means that I have been putting off going to the bathroom to pee for the past four hours, and I’m going to have to keep “holding it” as long as I want to write this, because the effort of my PCA and me getting me to the bathroom and back will probably cause so much pain and exhaustion that I won’t be able to write — or do anything else — for several more hours after. Not even speak.
This is where part three comes in: Disability rights activism. Those paragraphs above were my attempts, which I make occasionally, to use my blogging to reach nondisabled people and get across what life is like with my disabilities.
It’s also my way of trying to protect myself by heading off comments I find painful to read, because of my history of the hundreds of times nondisabled people have told me their experience is “just like” mine after I have described being in chronic pain, exhaustion, cognitive impairment, etc.
There’s another twist to my decision making about participating in activities: I never know, when I wake up, or throughout the course of the day, how much energy I will have. I might think I am good for some blogging and several training sessions, and then after having brushed my teeth and conducted a five-minute clicker session, I am spent for the day.
Probably the least-understood aspect of trying to explain “exertions” to people who don’t live this reality is that mental and emotional expenditures are exertions. In fact, thinking a lot or experiencing strong emotion can make me sicker than moving around physically.
Even happy emotions, especially joy and excitement, which seem to be a by-product of clicker training, cause release of adrenaline, which my body experiences as aerobic exercise.
Anger, frustration, resentment, hurt, feelings of helplessness, those really burn a hole in my energy wallet. I might as well do laps in the house if I spend too much time with those feelings.
So, when I read something hurtful or offensive about people with disabilities online, I mostly try to mentally walk away because I cannot afford to get upset.
This is how my original topic for this carnival got all knotted up.
Initially, I was going to blog about what it means for me, as a multiply disabled and chronically ill person, to train my own SDs. Then, I got inspired by Casey Lomonaco’s great Dogster post about fake “service dogs“ to address how much damage fake “SDs” do — when people pretend they’re participating in a working dog relationship, and they’re not.
However, as I was writing that blog two weeks ago, Lomonaco wrote a blog that had nothing to do with service dogs, but in which she used people with physical or cognitive disabilities as a metaphor for problem dogs, or just “problems” in general. I wrote a very carefully worded comment at Dogster, pointing out just a few of the harmful aspects of her post.
Although you can never control how other people respond to what you say, I was really trying to write something this trainer could absorb, because I thought she had the potential to be a good ally. I tried to write without any accusations or inflammatory language, just picking a few examples, hoping that her previous post on service dogs meant she’d have some willingness to take in my critique and apply it for the future.
I thought it unlikely she’d respond. I’ve never seen any blogger at Dogster respond to any comments there, in fact. (I thought it might actually be a Dogster policy not to allow replies to comments.)
Further, Dogster has a history of a lack of responsiveness to reader complaints (on virtually every topic), and aside from that one “fake SDs” post, I’ve never read any Dogster daily dog tip that addresses assistance dogs. Given this, I decided to raise awareness about the existence of Lomonaco’s post that contained ableist language. I wrote about it on my blog, hoping that other PWDs and allies would touch on other issues I hadn’t about the ableist nature of that post, requesting Lomonaco educate herself about disability rights issues and appropriate language when writing about PWDs.
After I put up that blog, I went to sleep. The next morning, I had responses from Lomonaco and from a friend of hers. Lomonaco told me I was hate-mongering, intentionally hurtful, and made a reference to the Klan (the last of which I found particularly insensitive and thoughtless, as she was addressing it to a Jew and a lesbian, two of the target groups for Klan terrorism and violence).
Her friend also peppered me with repeated comments, demanding that I educate her, after I had already spent three entire days doing nothing but replying to their comments. I offered them links, which I had to look up and post. I provided historical background for the problematic nature of their posts. I opened up my own heart to explain why what I read was personally painful to me.
Their comments fell into several of the classic responses intended to silence marginalized (in this case, disabled) people:
- Shut up/You have no right to speak up on this issue;
- Criticism is hate/You’re mean;
- I’m oppressed, too (and therefore, I don’t have privilege/can’t act in oppressive ways);
- I didn’t mean it/It wasn’t intentional/It’s not my fault/I had no way of knowing I was being hurtful;
- Your interpretation and/or feelings are wrong/You’re overly sensitive or overemotional;
- I can’t listen to you when you’re angry/You’re too angry/I’m not responsible for what I say or do because you’re angry;
- It’s your job to educate me/You’re not trying hard enough to educate me (thus, if I don’t listen, it’s your fault);
- There was nothing offensive there/You just don’t get it/I know more than you about your experience;
- I’m a nice person/You’re not being fair/It’s your job to take care of me and make me feel better;
- This should be done in private/You’re not acting “appropriate” and living up to “standards,” etc.
Having explained above what a limiting factor “energy” is for me, I hope it’s clear that when I say, “I spent three days replying to their comments,” I do not mean, “I spent three days replying to their comments, as well as training Barnum, talking on the phone, trying to accomplish some writing I might get paid for, and attending to my personal hygiene.” I mean I spent three entire days trying to get through to people who didn’t listen, and that’s it.
I didn’t know at first that they absolutely weren’t listening. If I’d known that, I probably would have just deleted most of their comments. However, because Lomonaco didn’t respond to my reply to her comment, I thought maybe she’d taken in what I said and was thinking about it.
Her friend, after initially being more attacking in her comments, after my efforts, raised my hopes that she might read some of the links and comments I (and a couple other commenters) pulled together to educate her.
Instead, after I’d explained that I was completely exhausted and done, she told me, “I know you say you have limited energy to discuss these things, but this is your opportunity to help someone like myself understand a little bit more where you are coming from.”
Then, I followed this person’s blog link and found myself referred to, by her and Lomonaco, as “the hater.”
What to do with this?
- After carefully spending three days providing information, links, and attempting to educate;
- after being called a “hate monger” and having truly hateful and inflammatory language falsely charged to me;
- after explaining why I felt hurt and asking for consideration for the community of which I’m a member in the future . . .
I was further depersonalized with two ugly words: The Hater.
By this time, I was too tired to cry anymore.
So, why, you might ask — as my partner did — did I waste my precious energy on these people?
My partner said, when I read her the paragraph in Lomonaco’s blog, “Everyone thinks that way [about disabled people].”
She knew I heard that all the time, so why struggle so hard when just two people depict PWDs as burdens, problems, misfits? Why did it bother me so much, this time, to read a laundry list of disabilities equated to a list of horrors in a dog-training post?
Here are my three reasons why I took all that time and energy.
1. The original reason I posted at Dogster and my blog is that Lomonaco is a very well-known and well-respected dog trainer. Hundreds of people read her posts. I found that out in a very tangible way when I had four times as many people visit my blog after that post went up than I’ve ever had before — hits that were not coming from my usual sources.
Here’s what I said in one of my comments:
I felt it was very important to address the remarks she made about PWDs in her widely read Dogster blog because of two groups of people who would read that blog and be affected by it:
A. People with disabilities, who would have to read, yet again, hurtful, ignorant comments about what it means to be disabled in a public forum, and feel that much more diminished and alone as a result,
B. People without disabilities, who would read, yet again, a lengthy list of disabilities being equated to troublesome, bad, burdensome, etc., and take those attitudes with them in their next interaction with a person with a disability.
2. When you are silent in the face of oppressive language and behaviors, you participate in the oppression of all people. Yes, there is self-preservation and picking your battles, and there are also moral imperatives.
As a child, I learned that under Jewish law, if you witness a wrong, and do nothing to intervene, you are as guilty as the one committing the act. I didn’t feel like taking on that burden of guilt that day.
3. Finally, also from my cultural tradition, quoting Rabbi Hillel: “If I am not for myself, then who will be for me? And if I am only for myself, then what am I? And if not now, when?”
“If I am not for myself”: I was speaking up for myself, as a person with a disability, as a person who spent several years unable to talk, as a person who requires assistance with personal care — some of the disabilities specifically listed by Lomonaco.
Further, the clicker community is “my home.” Because my disabilities prevent me from going to conferences, taking classes, meeting other clicker trainers in person, to some extent, I’ve had to fight to be part of this community. Still, it’s the only community, outside of my disability communities, that I truly feel a part of. The lists I belong to, the people I email with, what I blog about — it’s my neighborhood. I rent a room there. Lomonaco is one of the landlords on that block.
I feel utterly helpless to respond to rampant ableism if I happen to stumble into physicians’ blogs, humorist forums, business networks. I don’t speak their language. I’m beat before I start. If I am not for myself in the clicker world, where can I ever expect kindness and respect?
“If I am only for myself”: I actually felt more hurt and anger to see several of the other disabilities (deafness, blindness, congenital disabilities) listed that I don’t have, but that several of my most beloved and respected friends and colleagues do. My stomach turned over to see people I know turned into labels for “damaged goods.”
“If not now”: If I let it go, would this blogger — or any of her hundreds of readers who took in those harmful concepts without thinking — pause before using disability as a metaphor for “bad” or “wrong” or “difficult” in the future? What would stop them?
Given the responses I got, I don’t even know if what I did has made a difference — for those two people. But for the other people who commented on my blog, those whom I didn’t even know, who said I’d given them something to think about, who viscerally recoiled at children with disabilities as metaphors for aggressive dogs whom most people would not want to have in their home, I believe I did make some difference.
Near the beginning of this post, I wrote, “What’s good for my mental health is usually bad for my physical health, and vice-versa.”
It’s not even that simple.
For my mental health, my sense of self, my sense of justice, speaking up was taking care of myself.
For my physical health, the work that I put in, the disruption to my sleep, the toll it took on my functioning, it was a high price.
The highest price of all was to my spirit. After everything I tried, to be called “the hater,” felt utterly crushing. I’m still recovering from the sense of despair that imparted.
How do I make sense of it all? How do I try to right the listing ship of body/mind?
I regain my balance by focusing again on Barnum. I write some happy little blogs about our training victories.
Yet, I also wrote this blog. To bring it full circle and try to close the feedback loop.
Participating in the disability blog carnival is larger than myself, my blog, my dog training. Bigger than my dogged determination to keep trying to find the right path, in blogging, in communicating with the wider world. Bigger than being dogged by those who would deny my humanity in that most human of endeavors: to reach out and be understood.
- Sharon, the muse of Gadget, and, on a good day, Barnum, SDiT
**UPDATE: The story continues its twists and turns. . . .**
There have been many comments to this post (terrific comments, thank you!), and after this post had been up about 24 hours (after one day of the Disability Blog Carnival), the content at the original blog was changed in two important ways:
1. The offending paragraph was replaced with an apology. I thought the apology missed a lot of key issues, but I’ll let you decide if you think it’s sincere and useful.
2. My comments, Lomonaco’s angry rebuttal to me, her friend’s angry rebuttal to me, and all the other disability-related comments at the Dogster blog were erased — except Kali’s, whom Lomonaco seems to be using, in my opinion, to try to “divide and conquer” (going for the marginalizing tactic overachiever award?). Too bad for her that Kali and I like and respect each other and are not fooled by such shenanigans.
For more details about what was changed and why, see my points in the comments section of this post.
A helpful reader (thank you, reader!) found the original post in the Google cache, and I am pasting it below so those of you who missed the original will see what the real issues were. Here is what the original Dog Aggression Myths Part VIII said:
The fact is that many of the best dog owners I know would not want to live with an aggressive or reactive dog. This doesn’t make them “bad” dog owners, it makes them perfectly normal. Many people adopt human children. A small percentage of adopters of human children may be willing to adopt a child with Down’s Syndrome, severe birth defects, severe behavioral issues, a child who will always need someone to change diapers even into her teenage years, a child who is blind or deaf or may never speak. Are the people who choose not to adopt these children horrible people or horrible parents? Certainly not. It takes a special kind of person to accept these additional responsibilities and limitations, someone who is willing to accept a variance of what is the “normal” parenting experience.