The song “Wonder” by Natalie Merchant is one of my favorite songs. I regard it as a disability anthem. Here is the music video of the song in which the singer and many women and girls sing along to the music. The women and girls are a variety of ages, body types, and races. At least one of the people in the video has Down Syndrome. I love everything about this song. It is joyful, it centers the narrative on the disabled girl/woman’s experience, and it pokes back at the abled people–doctors and journalists– who are so fascinated by her.
To quote Harry Potter.
It’s difficult to separate out my life into the disability stuff and what life would be like without it. I don’t remember much of my life beforehand. Something I’ve been aware of for years is how distrustful ableism has made me.
I’ve been primed to be constantly aware of other people’s attitudes. I worry that people I’ve known for years think I’m exaggerating or lying when they ask how I’ve been. The sad thing is that this isn’t an unmerited fear. I have had people turn on me. I’m all too often aware of the need to watch what I say, watch people’s faces, watch my back. Because a rumour might start, or a friend might “forget” my access needs, or someone in a position of power might make life difficult for me. It can go wrong in a split second, and it has.
I’m not the most trusting person in the world in any case, but being disabled in this ableist world has taught me that complacency is something I cannot afford. I can’t expect that people will treat me like a person, and I can’t expect to go outside and not have to worry about accessibility issues all the time. That’s so terribly sad. And this constant vigilance is now so much a part of how I deal with the world, how I go about my day, that I don’t know how I’d go about teasing it out of myself, letting myself relax, even in the event that ableism and inaccessibility suddenly disappeared from society.
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.
I do not suffer from autism.
I suffer when someone calls my way of being a disorder.
I suffer when others invest time and money to prevent people like me from being born.
I suffer when anyone suggests that I might recover or be cured.
I suffer when others feel sorry for me or for the family I have created.
I suffer when I fear that people will consider me broken.
I suffer when my being autistic scares people away.
I suffer when others try to silence me.
I suffer when people suggest that I do not have all the same feelings they do.
I suffer because I must describe my way of being by referring to a medical diagnosis.
I suffer because I live in a society that does not celebrate difference.
I suffer because I live in a culture that does not cultivate sensitivity.
I suffer because I live in an environment that values appearance over substance.
I suffer because I live within a social order that calculates human worth based on productivity and conformity.
I suffer because I live in a world that does not honor the gifts that autism brings me.
I suffer because I have learned to apologize for who I am.
But make no mistake: I do not suffer from autism. I do not suffer from who I am.
[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]
Chally pointed out to me the other day that I was coming up on 100 posts. If scheduling goes right, this should be it. I wasn’t sure what to do with it. I noticed, but I wasn’t sure if I should mention it. She has a knack for making people feel proud of things, no matter how trivial they seem to a person, she can make it seem like you’ve won the Pulitzer on your worst day.
It’s funny, the things you learn over the course of all of those 100 posts, or at least I did. Also funny are the way we assign value to things as arbitrary as numbers. Why is this post more important than the next or my last? Why does the first death in a war mean more or less than the 1,000th? Some people have written more, and some less, and for each of us our number is irrelevant. For me, I have a thing about marking out nice round things in ordinal series. Some birthdays are a bigger deal to me I suppose, though my mother remembers all of the recent ones.
It is, instead, what we put in and take away from a moment that matters more so than the number.
I, back when I first started blogging back at my humble little blog, wanted to be part of a group blog. Not for page hits or attention, but to be part of something. To feel that sense of belonging to a group, of being with people who had a sense of purpose. So many things in my life were constantly in disarray, and I wanted… no, honestly I needed something to feel connected to.
And it took a while, but by a random happenstance I was in the right place at the right time, and fell in with a remarkable group of people who came together to channel something hurtful into something positive, because instead of allowing ourselves to be angry, we decided to focus on being a force for change. Thus, did my life take me in a direction I never saw it going, because I had just begun to grasp onto this part of me that was OK with identifying as someone who is disabled. Not only that, I had not really learned how to interact with other people who identified that way. I was shy about venturing out as any kind of public face, let alone as any kind of self-spoken authority. Who was I, I wondered, to pretend that what I had to say mattered?
But I found out that it did matter. Not because, necessarily, that anything particular I had to say matter, but that I took a brave step and spoke up. I have always felt that the shortcomings in my life — my lack of college degree or extensive career — made me less of a credible person. What I found here was that it is the way we, as a community, relate to one another. I found that here I have a voice that matters, if not to many people, perhaps to just a few, perhaps to just one, and if I am brave enough perhaps I can be the advocate for that one person. If one person feels connected to this the way I finally feel connected then I feel that it has been worth all the tears and heart that have been poured into these 100 posts over these past months.
Even more, I found that these remarkable people, these co-contributors and founding members, have become something so deeply ingrained in my life now that not a day goes by that I don’t think of every single one of them and how they have impacted my life. I think about the way that Anna taught me to look at everything I see and think about how it could be more accessible and not to feel bad about demanding that it be so, and how lauredhel reminds me that part of being a good mum is teaching more independence because it leaves me more spoons to enjoy the fun times. I am reminded of the way that K-0 uses words artfully and lovingly, and the way that Amandaw reminds me of myself sometimes with her fierceness to defend fellow PWD. I think about Chally, who is often there at the right moment with the exact right thing to say, and abbyjean, who has a knack for looking at things from a different angle and getting to the quick of it. I can’t forget annaham, who was the first person to reach out to me and help me identify with my disability and to realize it is OK to be unsure of myself and to find strength in asking for help, and I can’t forget s.e. smith whose passion holds it all together and who sees the way everything is connected.
All of these lives have become intertwined with mine, irrevocably. All of you have become a part of it, for the part you play in reading these posts, linking them, sending them around the tubes of inter. We have all made connections and many of us have touched and impacted one another’s lives in many ways. There is amazing power in that… or, there has been for me, anyway. It is what has made the FWD dashboard the first thing I look at on a day I can work and the last thing I check before bed on the same.
I just wanted you to all know that. This is what I have taken away from these 100 posts, and I hope that is what I have put into them for you. That we, as a community of people who want social change for people with disabilities, have reached out and touched across the expanse of space and time, to be slightly cliche. You have impacted me, taught me, and given me more than I deserve, but given me everything that I had been searching for. I hope that through my learning, screwing up, and trying to get it right, I have done a decent job for you all. All of you, contributor and community member alike.
I’ve been in hiding.
I admit it.
I’ve been shoving myself headlong into activities that keep my busy, and exhausted.
Still I always feel
This strange estrangement
Nothing here is real, nothing here is right*
“Wow! Aren’t you Supermom?”
Well, not really. It just keeps me occupied.
Just hoping no one knows
That I’ve been*
But really, I don’t have this kind of energy. To run to all these practices and game and meetings. To keep up with the chores. The volunteer events. To make meals. The group photos for people. Bringing snacks and handing out sports drinks. To pack lunches. The doctor’s appointments.
Going through the motions
Walking through the part
I have drawn it from somewhere. But I don’t always have somewhere from which to draw it. I feel like I have had to, though. Because if I didn’t I would have to think about the things that roll around in my mind.
And I just don’t want to do that.
I was always brave
And kind of righteous
Now I find I’m wavering*
It isn’t a pity party, or a call for anyone to feel sorry for me. I can’t even say it is a moment of clarity where I realize the err of my ways and that I will stop this silliness and start taking better care of myself. It’s a little late for that now that events are in full swing and people are counting on me to keep going somehow.
It’s my coping mechanism… however good or bad it may be. We all have them. Mine may just lead to more crashes, a slightly elevated pain med use (which is still well below my prescribed allowance), and periodic bouts of me crying into my pillow at night because I am too exhausted and in too much pain to sleep.
Will I stay this way forever?
Sleepwalk through my life’s endeavor?*
So I keep going through the motions.
Eventually I have to pay that proverbial piper (that jerk), but it keeps me going, in a sense, for now.
I don’t want to be…
Going through the motions
*“Going Through the Motions”, “From Once More With Feeling”, Buffy the Vampire Slayer, Season 6
I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.
Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication. Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?
One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.
I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.
We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.
These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?
Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?
How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?
I have had an extremely long day. I barely ate lunch and then worked through what should have been dinner. And now I’m tired and cranky and hungry and there’s not really any food in the house because I’ve been busy and tired all week and so haven’t made it to the store.
It would be amazing to order some food. But I have a major block and cannot, do not, order food for delivery. To me, it feels so indulgent and spoiled and a waste of good money that I just cannot let myself do it. This is a completely irrational block – I do plenty of things that are more expensive and do me less good. (For example, my new laptop didn’t need to be so shiny and zippy – and I’m not sure I really needed one at all.)
Instead, I ate two bowls of cereal and a big handful of chopped walnuts. Meh.
Is there any kind of help or accommodation or similar that you just can’t let yourself accept?
As I mentioned recently, I’ve just gone back to school. I was enrolling for classes over the summer and kept coming back to a course called “Mental Health Policy.” Here’s the description: ‘Examination of evolution of social policy and services for mentally ill, with emphasis on political, economic, ideological, and sociological factors that affect views of mentally ill and services they are provided.’
Sounds right up my alley, right? Half of me really wanted to take it, but the other half of me wants to stay as far away as possible. Because I don’t want to hear people talk about people with mental illness like they’re a separate species, like there’s none of them in the room. I don’t want to hear people advocating for involuntary commitment. I don’t want to listen to people talk about how hard it was on them to have a relationship with a person with a mental illness. I absolutely do not want to hear the terms “those people” or “crazies” or “lunatics.” I just don’t.
I know that in theory, the professor is supposed to take care of those kinds of things. But the more time I spend on disability issues, the more thinking and reading and discussing I do, I find myself moving more and more to the radical end of the spectrum. Reconsidering and rejecting a lot of the “for their own good” policies I’d been okay with in the past. Thinking more and more about the social model of disability and becoming more insistent on demanding movement and changes and sacrifices from TABs instead of being willing to sacrifice and go without.
And I don’t have any faith that the professor would agree with me about all of that. There’s a difference between demanding baseline sensitivity to disability issues – using people first language, recognizing and respecting autonomy, including the viewpoints and rights of PWDs in discussions – and expecting the professor to be as or more radical than me on every potential issue. The first is reasonable (or should be), the second is not. (Unless maybe I was enrolled at Radical Disability Studies University.) But I knew that if the professor didn’t live up to that unreasonably high standard, I would feel irritated in every single class meeting. I would think about how radical or confrontational to be in my papers, my exams, my class discussion.
And then there would be the big question: do I disclose my disability status, or not? Do I talk about mental health policy without being explicit that I’m in the group of people who would be affected, or do I trust these strangers with extremely personal information about myself? Which of those could I live with? Which would make me the least uncomfortable?
So I’m passing up this learning opportunity – and potential teaching opportunity, as I’d imagine I’d run into some “teachable moments” at some point during the class. Because I just don’t want to deal with it. I just don’t have the energy.
And that, frankly, is a real shame. I’d love to do the reading and have the discussions and engage in the thinking that comes with the class. And I’m sure I have some opinions and experiences that would enrich the discussion and benefit other people in the class. But it’s just not worth it for me.
Lisa Harney is a single lesbian with ADHD, three cats, and a penchant for writing about social justice and transphobia. She blogs regularly at Questioning Transphobia.
So one of the most frustrating experiences of coming to terms with my disability is realizing just how much ableism has impacted my life without my realization. I mean, I knew that this stuff was not really fair or reasonable, but I didn’t really know why.
When I was in the first grade, my teacher told my mother she thought I had a learning disability. My mother’s goal was to prove that I had no disabilities at all, so she had my intelligence tested and I was categorized as “gifted.” It was also determined that I was nearsighted, which required me to wear glasses. Somehow, unfortunately, neither of these solutions actually helped with my problems: I had trouble retaining what the teacher said to me, and I had trouble doing all of my schoolwork.
In retrospect, being marked as gifted was mostly negative. It meant I had more pressure to perform well, that I should be a straight A student, but I never managed this. My report cards are littered with “doesn’t pay attention” and “doesn’t apply herself” and other negative assessments that read to my parents as “Lisa doesn’t fulfill her true potential.” Now, of course I wanted to, but to me grades felt almost like an arbitrary lottery. I never got grades commensurate with the effort I put into class, and no matter how much effort I did put in, I’d get in trouble when my report card had too many Cs and Ds. There was a reason I could make it to the spelling bee state finals and do calculations in my head, and yet still couldn’t maintain any kind of consistent quality of work.
This had repercussions at home. I learned from my father that I was stupid, lazy, inconsiderate, and selfish. I learned these lessons really well. I internalized them. Somehow I was convinced that I was really sabotaging my own school work. His conviction in my potential wrongdoing was such that he would grill me about what I did at school every day once I got home, and the right answer was always “I didn’t do my schoolwork.” If I said I did, I’d be punished for lying. So I learned to lie to him because the lie was the only acceptable answer. And he convinced me I was an inveterate liar, so it was interesting to realize once I got out on my own that I was total rubbish at it.
So yes, from most of my teachers as well as my father, I learned that I was pretty worthless; that I was stupid and lazy. That my problem was that I refused to apply myself and spent too much time daydreaming, or reading novels, or playing games (role playing games, mostly). That everything I enjoyed was a personal flaw, and that everything I failed at defined me. And this has stuck with me for a long time.
This carried through into my first long-term relationship – which was also abusive. But my partner liked to especially pick on my inattention, my tendency to zone out in the middle of a conversation, my forgetfulness, and insisted on treating me as if I was a child to be controlled instead of her girlfriend. She went beyond this, but this itself is apparently a common pattern in relationships with ADHDers – that a parent-child dynamic develops. This is often framed in articles and literature and by non-ADHD spouses and partners as something the ADHDer is totally responsible for, and relationship problems are often blamed entirely on ADHD, but the non-ADHD partner’s ableism is practically never discussed. And being treated like a child, having every mistake scrutinized and berated and everything you do ignored and forgotten takes a huge toll on you. It’s abusive. My partner was abusive in many ways beyond this, so I don’t want to make it sound like her ableism fueled all of the strife, but it definitely had an impact.
Every attempt I made to enter college hit a wall. I would do really well (and learned I was not in fact lazy or stupid) until I couldn’t anymore. I don’t really know how to describe it. I wanted to get my degree, but once I hit that point, college went from doable to extremely difficult. It may have been changes in routine, greater difficulty in classes, overall stress from spending that much energy to excel constantly without a break. I don’t really know. I just know that I would hit a point beyond which it was very difficult for me to continue. And that I didn’t even know how to find support or assistance, that I don’t feel resources for this were really clearly explained to me if they existed at all. And besides, maybe I was lazy and stupid, right?
Most of my jobs went the same way – I’d do a job well until I couldn’t keep it up any longer, and I’d often have to quit because simply going in was difficult. Again, this is hard to describe, how this works. It is not that I wanted to lose my jobs or that I did not enjoy them, but that I’d end up being unable to continue, or that I’d find it difficult to meet basic requirements like punctuality. And I’d be left wondering how I could have sabotaged this amazing job, and how lazy and stupid I must be and how much I must hate myself to make these choices.
And this really was a spiral of self-hatred and recrimination that continued until the past few months. That I was holding myself to standards I had no idea I couldn’t attain without help, medication, accommodations. That my knowledge of ADHD, the background cultural knowledge was so lacking in information that I really had no idea how to start looking into this, or even that there was anything to look into. I spent more time wishing I had done everything better, that I hadn’t made so many mistakes, that I hadn’t lost two promising careers, that I hadn’t apparently done everything in my power to block my own success. That I had no idea I was not only limited because of my neuroatypicality, but because there simply wasn’t any easily accessible information that would have helped me realize what was happening to my life. Even when I saw doctors about my GAD and panic disorder in 2003, the possibility of ADHD never came up.
Since I wrote my two posts about ADHD on Questioning Transphobia, I’ve had several people tell me in comments, e-mails, or chat that they related strongly to the symptoms I described, that by making my experiences with ADHD accessible, people who have been undiagnosed so far – who might themselves have ADHD – know about the possibility and can respond to that information. According to at least one researcher – Dr. Russell Barkley – it is possible that only 10% of ADHDers who have gone undiagnosed into adulthood are diagnosed as adults.
I am not saying that experiencing ableism without even realizing you have a disability – let alone what ableism is – is worse than experiencing ableism when your disability is known. Just that it was a dark moment for me to realize how much of my life has been defined by ableism, and how much I had no defense mechanisms at all to cope with that and how much I had to realign my own understanding of decades of my own life. The end result is good, in that I was able to resolve a lot of my own self-hatred, but the realization itself was a bit shocking.
Interested in submitting a guest post to FWD? Read our call for guest posts here for more information!
This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…
I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.
These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.
I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.
This is ableism.
Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.
I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.
These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.
One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.
All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.