Disablism in action...

One of my favourite recent posts is Of Boxes and Bias from Anne C's Existence is Wonderful site. Her initial paragraphs describe perfectly the mechanism of Disablism in action.

Today's post is my contribution to the May 1st "Blogging Against Disablism Day" (follow the "Disablism" link above or click the colourful logo in the sidebar for more info). I have been running up against Disableism- predjudice against those perceived as disabled- since the early 1970's, when I was in my early teens & started working at our local United Cerebral Palsy's summer day camp. In my mid-teens it became more personal. My family discovered that I had subluxing kneecaps, a genetic condition, & I began many years of surgeries, crutches, canes, 7 years in a wheelchair, (for reasons beyond just the knee problems) & ultimately lifelong arthritis from it. I remember back then people asking me if I'd broken my leg, when they saw me on crutches, & as time went by their breezy assumption that I had something "fixable" became more annoying than comforting.

Fastforward to 2001, the year we discovered that our 5-year old son had severe developmental delays, which were diagnosed a year later as Asperger's Syndrome (an Autism Spectrum Disorder). Over the past 5 years since his ASD diagnosis, Brendan has also been diagnosed with Obsessive Compulsive Disorder (OCD) & Tourettes Syndrome. The kinds of disableism that Brendan faces are different than those I did (& still do to a certain extent) face- he is not as readily recognised as a person with a significant difference, unless he's ticcing or having a public meltdown due to sensory overload. The barriers he faces are not those of "stairs but no elevator" but those of a more subtle type. Sights, sounds, & smells that most people may not notice or even find pleasant can be overwhelming to him. Some have OCD associations that produce tics- twirling or loud, explosive noises, or full body spasms. Many of the barriers Brendan faces are educational. He does not write fluidly & finds even typing not to be a fluent interface for putting his words/work down on paper, so we've been trying volice-activated software to see if this will help him. Brendan is working on pragmatic speech with his speech therapist so that social interactions will have fewer barriers, & with his occupational therapist he's working on motor co-ordination & planning, & relaxation techniques that he can use when overwhelmed by sensory or OCD overload. He takes 3 different medications to help control the OCD & tics, & sees a psychologist regularly for cognitive/behavioural therapy so that he can do & be the best he can be. We are very fortunate that his school (a private, alternative school) is progressive & works well with our district to provide an optimum educational situation for him. His teachers like him & want the best for him. From reading other blogs of parents with autistic kids, I know that we've found a rare & wonderful situation for our kid, & we're already nervous about what we'll do in 3 years when he graduates from this school & moves on to high school. We are also very fortunate to be connected with a church community that has allowed us to expand our (& Brendan's) social connexions in the world while maintaining a safe environment for him. We have been part of this church for many years (pre-dating Brendan) & have shared our journey with him & his neurological differences every step of the way. He's fully integrated into the Sunday School (we were his first teachers, then weaned him onto other adults :) & has friends young & old at church.

Where Brendan runs up against disablism the most is, of course, in public & when interacting with people he's never met before. His tics often take people by surprise & they don't know what to make of them. When feeling comfortable, Brendan's been known to clue people in ("I have Tourettes, in case you were wondering.") & we are delighted by his self-advocacy. We also know (& worry) that he is more vulnerable to bullying because of his tics & social difficulties. Bullying is a significant &, although common, extreme manifestation of disablism. Bullying takes the range of what could be "normal" behaviours & narrows them to only those acceptable by a certain group. We do a lot of talking & problem-solving with Brendan when it comes to the possibilty of bullying. The last thing we want is for him to become a victim. The thing about being in public with Brendan is that we can't always change the things that give him sensory overload or trigger the OCD, so we have had to modify how much we actually interact with "public", & how we interact, over the years. In a way, it was a lot easier when he was little- people don't think twice about a tantrumming 3-year-old in a store, nor do they wonder if he's tantrumming because he's autistic (at that point, even we didn't know...). However, an 11-year-old having a meltdown in public is very different. It's not only embarassing for him, but people fear "aggression" & worry about "violence" before they really understand what is causing it. As a result, we have become extremely sensitive to signs of overload from Brendan & take steps to remove him from the stimulus before it becomes a problem. We also plan any trips out of the house, whether they be to the grocery store or across the country, very carefully & with his daily rhythms in mind. Perhaps this is where Brendan can most be considered "disabled". He just can't take part in the sorts of activities expected of kids his age, & although he's doing a beautiful job of learning about what he can & can't handle, & what to do about it, he still needs a lot of help.

Perhaps the most painful incidence of Disablism we've faced so far was recently handed to us by Brendan's paternal grandparents. They don't see him more than 3 times a year, since they live about 5 hours away part of the year & in Florida in the winter. We have done our best to keep them apprised of his progress, & also let them them know about the current difficulties he's having before they come to visit or we visit them, with the idea of making the visit go more smoothly. Charlie & I had really thought that they were "on board" with Brendan's autism & accepting it as well as could be expected. But last week we received a letter from them accusing us of overstating his difficulties & "needs", & also accusing us of rudeness during our last couple of visits because we'd chosen to remove him from situations a bit early because he was becoming stressed (once he was in full meltdown & we barely got him to the car...). The main evidence that shows we're not being honest with them turns out to be our up-coming, long-awaited family trip to Japan (!). In their minds, we'd have to be crazy to take "a child like that" (with Brendan's difficulties) to Japan. So, in their world, "a child like that" doesn't have the right to travel to a place he's wanted to go since he was 4 years old. No matter that he's been studying the japanese language for 2 years... And, of course, there's no recognition of everything we do to tilt the scales in our favour when travelling with him- planning our days carefully for sufficient down-time, choosing quiet places to stay, helping him cognitively focus in advance on the places we'll visit so that he'll have points of reference. There are, of course, a lot of other, long-term, family-type issues going on in the background of these accusations (which we are consulting my therapist for help in dealing with), but I can't escape the disablism inherent in the assumptions being made about Brendan & autistic people by their attitude.

Attitudes, of course, are what disablism is all about. It's pre-judging people based, not on factual information, but on what is believed to be true about people. One of the ironies of having an autistic child these days is that the loudest voices in the media these days about autism, by a group claiming to "speak" for autism, refer to autistic children as "poisoned" by mercury or vaccines, "train-wrecks", & dwell on the general horribleness of dealing with autism. They perpetrate essentially false images of people with autism, supposedly in the name of advocacy (!), but what they are really advocating for (& fundraising for) is a "cure" so that autism will be eradicated from the face of the earth- a breathtakingly callous way of talking about something that is central to the lives of so many people. Even the language of recent legislation in the US supposedly designed to help autistic people & their families is called the "Combating Autism Act", which brings to mind destruction rather than assistance... The reality for my family & many others, & for many autistic adults, is far different than the stereotypes. We love out neurodiverse son for who & what he is. We give him everything we can to help him blossom into the person he will become (as we would have whether or not he were autistic), but we love his autistic self very much. I believe that his autism is an essential part of who he is. We don't want a cure- what we want is for the attitudes of society to change so that there will be fewer artificial barriers to his achieving his dreams. That's really what disablism is- artificial barriers to progress for anyone. I remember vividly, when I needed a wheelchair to get around (& to play basketball & "run" races in), wondering what made me a "disabled" person- the wheels, or the flight of stairs that kept me out. I can ask a similar question for my son, too. Is he disabled because of his neurological differences, or because society has put particular barriers in his way?

The good news is that things have changed a lot since I first became aware if disability rights issues. I have seen attitudes toward the disabled shift, kerb cuts become the norm. It's not nearly what it should be, but change has happened, through the hard work of activists. Awareness of autism is shifting, too. The moderate & neurodiverse perspectives are being heard, & the sheer numbers (not an epidemic, as some would declare, but better diagnostics & less stigma) of kids identified as autistic or pdd-nos are making a once scary & isolating diagnosis much more common. I am surrounded by other parents, now, who are wrestling with their school districts & IEP's, comparing notes on pediatric neurologists, & sharing references for good child psychologists. :). And, drumroll please, we are taking our autistic kid to Japan this June. Just our small contribution to countering disablism... :) Let's all do our best today (& every day, of course) to be aware of the attitudes & predjudices that surround us, & do our best to let it be known that we can transcend these barriers, & that the world is always a better place when we do.

It's not "all about us"...

The last 2 days of the school break were a bit busier than the week itself, with friends visiting both days, but a nice end nonetheless. Brendan had another school friend over (for the first time) on Saturday afternoon & they had a very nice time. They went outside with Charlie twice, once sledding & once to the snow fort down the road. The inside time was spent playing with legos & watching excerpts from "It's a Mad, Mad, Mad, Mad World" accompanied by much giggling. Sunday we had grown-up friends from church over to lunch & Brendan spent some of the time watching the new Pokemon dvd that he'd (finally) earned with his behavioural chart & playing his new Advernture Quest game, Dragon Fable, while we visited- so it was a win-win :) He was also quite friendly over lunch & talked about our upcoming trip to Japan with our friends. I was happy to see him so relaxed in the afternoon because he'd had major tic trouble at church that morning. There was a special lunch being prepared (we hadn't know about it when we made other lunch plans, but it turned out for the best...) that day & Brendan found his Sunday morning session of Adventure Quest at church (while Charlie & I were in choir practise) horribly disrupted by the smell of meat cooking. Sigh. By them time the service started he was very upset & at first he wouldn't even read the book I keep in my church tote bag, which is what he usually does until we all leave for Sunday School (the kids & RE teachers are in the first part of the service). I finally conviced him to read & that distracted him very nicely, but when he got to Sunday School he didn't want to stop reading & go into his classroom. I didn't rrealise what was going on until my class came out in the hall to put some stuff on the bulletin board & I found one of his teachers hovering between him, sitting in a chair & reading on the landing leading to the RE wing, & his classroom down the hall. I asked Brendan what was up & he said that every time he put the book down he remembered the meat cooking, so I told his teacher that he'd come with my class (I teach Sr. High) & my kids were fine with that, so he sat & read the rest of the time. He smelled the meat as soon as we got downstairs, so we had to hustle a gagging child out of the side door, to a few puzzled stares (new folks who don't know us :). He was very angry on the way to the car, about how people killed those animals & were going to eat them, but calmed down once we headed for home, asking if we could go to the asian restaurant that we've been visiting the past few Sundays for lunch (at his repeated request). We explained again that friends were coming over, but held open the possibility of going out to dinner. And then we got home, & friends came over, & Brendan was fine.

I wasn't really fine, unfortunately, having woken-up with some sort of sinus thing that had my nose running like a faucet. By the time our friends left my head felt as though it was going to explode, so I took more tylenol & laid down on the sofa, while the guys withdrew to the second floor to play legos & watch some videos. After about an hour & a half I felt well enough to sit up & even eat some dinner (Brendan very sweetly didn't even mention going out...), which was a real blessing. After Brendan had a bath we all watched 3 episodes of Pee Wee's playhouse (he'd wanted to watch 3 before bedtime, so we calculated together when we'd have to start, & by extensionn when he'd have to have his bath, so we'd be done by bedtime). He was a bit grumbly about going back to school in the morning, but Pee Wee cheered him up :) He fell to sleep very well- so far there's been no noticeable effect of the reduced seroquel dosage on his falling asleep...

This morning I did wonder if he wasn't feeling the effects, though. He was predictably grumbly, moany, bad-tempered before breakfast, but half-way through breakfast he had a terrible tic that had him red-faced & gasping for breath. I felt really awful for him. He ran for the sofa & as I sat with him he was able to relax & tell me that the tic was related to the ones yesterday about people cooking & eating meat. He said that the tic made him feel that he shouldn't be alive... but he did tell me that it was ok to eat plants (whew!). I reminded him of how the american indians used to thank the spirits of the plants & animals they ate, & were acutely aware that they were part of a cycle of life & that they needed to respect it. We talked about how we've started to say "ittadakimasu" (what the japanese say) as a grace before eating & how that way we give thanks everything that goes into the growing & making of the food. When he seemed recovered from the tic I asked him if he wanted his breakfast & he asked if he could eat on the sofa. I told him he could if he was careful, & brought it out to him. The rest of the morning was fine & we got off to school nearly on time (although the laundry had to wait until I got home). He was in a good mood when we got to school & was sitting at his desk doing morning work when I left. He did ask if he could call me if he needed me & I told him he could, then explained that I had one appontment where I'd be on the cell phone (just for emergencies), so that he wouldn't worry if he called & I wasn't home. So far, no call...

Over the weekend I witnessed & participated in a discussion of sorts in Kristina's Autism Vox site. At last count there were 54 comments on this particular entry, that was about Amanda Baggs being interviewed on CNN. One "participant" (I must loosely define participant here, since he really wasn't doing much taking-in of what others were saying, in my opinion) turned things to a back-&-forth, us-vs-them exchange about "curing" autism, essentially telling folks that if they weren't in the curebie camp they were "in the way". I found myself increasingly disturbed by the tone of this parent's comments & even made a second comment to the effect of "who told you a cure exists?". Rochelle made a heroic attempt to bring him into line, explaining that it's common courtesy to discover the general outlook of the site at which you are commenting before disrupting the flow with ignorant remarks, but he didn't get it :( At one point I found myself hugging Charlie in the kitchen, while describing it all, really put-off by the obnoxious sense of entitlement that emanates from some of these hard-core cure types. Charlie just nodded agreement.

Up till now I have felt very wary of taking on this sort of thing in the blog. I cannot know or understand how another person feels & I'm acutely aware of it, so I try to be careful of others' feelings & perspectives about autism in my life & in my writing. But reading what that one person seemed to think was unflagging devotion to their cause made me feel as though a line had been crossed & I had to say something. And that something is this:

"It's not all about us!"

In other words, autism is not about the parents, & unflagging devotion, when it is disrespectful & thoughtless, is just plain wrong. I am the parent of an autistic child, who will someday be an autistic adult, & I do have have feelings about the process of raising an autistic person in a society that has a long way to go in terms of accomodation & acceptance. It's natural... I'm a person who is learning & growing & trying my best. I haven't always done a very good job of managing my feelings about the process... But the whole process is not about me or my feelings. It's about my son. His feeling are really important. His feeling competent & good about himself is essential. If I feel bad about him, how can he feel good about himself? This is my basic problem with those who feel they can "hate autism" but love their child. I just don't see how this is possible... Kids are smart & verbal ability doesn't determine anyone's intelligence (or, as an aside, one's worth as a human being), so I believe deeply that the child of someone who hates something about this child runs a terrible risk of picking up on that hate. What a sad & awful thing...

And as for a cure, who ever promised anyone a cure for autism? Who ever said such a thing was possible? It is not defeatist to accept something & move onward with it, learn to live with it, let the struggle make us better people for it... Perhaps my perspective is the result of spending many years working with & befriending developmentally disabled children & their families, beginning back in the early 1970's. I knew many, many families with disabled children. I was on the babysitting list at the local UCP centre, so got to know many families very well. I became close friends with a girl my age with CP, too. I saw the struggles, I saw the sadness, I saw despair... I also saw joy, pride, & love. I learned that the ability to cope successfully with the raising of a disabled child was not limited to certain income levels or education levels. It seemed to have a lot to do with overcoming grief & getting on with life. The families that were stuck in grief never seemed to be able to fully accept their child, & this was very damaging. Those who were able to move past raised children with higher self-esteem, & like my friend with CP, are now successful adults (she became a special ed. teacher :). I never ran into a family of a child with CP or Spina Bifida, or Muscular Dystrophy (telethons irregardless...) who felt they were entitled to a "cure" for their child, either. There was fundraising for research, the hope for prevention or better treatment, but no-one talked about a "cure". I can't help but wonder if this is a sign of the times, before micro-chips & sophisticated genetic testing was available. Now we have prenatal screening for many things & tests on the horizon for many more. All of this promises a "better" world (at least for those who have access to them), but I don't buy it. Many others have spoken more eloquently to the issues of eugenics & decreasing our human diversity, so suffice to say that I share those concerns. But another concern I have is when did our society get this sense of entitlement? When did the overwhelming sense that parents have the right to blame or sue or expect restitution for giving birth to a child with significant differences occur? When did we decide as a society that all people have the inalieable right to being "perfect" at birth? And, for that matter, who decided what "perfect" was? Perhaps it's that I have been surrounded by "the disabled" (& actually been disabled myself) for most of my life, but I never expected that my child would be "perfect" when he was born. I hoped he would be ok, sure, but my main concern & joy was bringing him to life!

At first, of course, having a baby is about "us". Charlie & I really wanted a child because we felt it would enrich us a individuals & as a couple, although we never expected it to be easy. This has turned out to be true in every way. A big part of that enrichment has been the discovery & nurturing of another human being, with his own individuality. I'm not in charge of just how individual he gets to be- that's up to his genetics & the indefinable "Brendan-ness" of Brendan. I think that we've been aware of this from the very beginning, & why I am aware that I really need to get out of his way sometimes, so Brendan can be Brendan. As his mother, I feel I have the right & responsibility to help him become a functioning person in our society, to teach him & encourage him to be his best. This teaching covers everything from education to manners to a sense of his belonging to the human race, with all that this means. I also have the right & responsibility to call society on the carpet when it's definiton of functional is toxic & unrealistic. That's where the advocacy comes in... & by doing our doing this for him, Brendan learns how to do it himself. In no way do I believe that "Autism Advocacy" requires that my kid's autism be changed ("cured"). Having sensed in my gut, back when I was in my teens, that the families that moved forward with their lives, loving & adapting as necessary to their disabled children, were the ones who succeeded in all the ways that I count success (happiness, satisfaction, production of functional people) I have decided that's the way we'll do it, too. No amount of railing, weeping, or anger at his difference will help my son or my family. In fact, by not taking a cure stance, we are moving forward as a family. Our positive attitude ripples around us & affects those we know in positive ways, too. As much as I weep sometimes because of Brendan's pain (from tics, from OCD anxiety), it's just a fraction of the time we have together. Keeping this in perspective helps, as has also the successful weathering of past emotional storms. There was a wonderful post by abfh recently that explored the very appropriate place of suffering in life, & the buddhist perspective that "Life is Suffering". It's no wonder that I've found buddhist thought very helpful in my journey as a parent...

For me, the bottom line is that life is what we make of it. When I chose to bring new life into the world, I knew I'd have to stretch myself. That's one of the reasons I wanted to become a parent. But I can't stop stretching... every day I stretch, sometimes it's really painful. Sometimes I fail, & sometimes that's even ok- how will Brendan learn to accomodate others or empathise with them if I'm a saint? I follow my internal sense of fairness (something Brendan seems to have already well in place, too :) to determine when I'm stretching too much, or when I'm not & being selfish. I can listen to my kid, too (thanks to his sense of fairness) & at least take him seriously, of not actually acceding to his wishes. I can listen to my husband, too. I read, I learn, I talk to others, & I hope to do my part to make the world a better place. Not a perfect place. An accepting place... a good place to be alive in.