The Downside of Assumptions

Disability advocate Dave Hingsburger wrote a great post the other day on the assumptions that people make when you're disabled (which I've blogged about before). He talked about how, when he was watching a St. Patrick's Day Parade in Toronto, sitting on the sidewalk in his wheelchair, the people on the floats singled him out to waved at the same way they did the kids on the sidewalk.  Now, of course, correlation does not imply causality, but Dave Hingsburger has worked with disabled people in communities a long time (as have I) and I agree with his assessment of what went on: the people on his floats made an assumption that his physical disability also meant the presence of an intellectual disability, and started treating him like a child based on that assumption. I've seen it happen it before.

Hell, I've had it happen to me. At a conference of service providers for intellectually disabled people, actually.

Assumptions: Story Time

I attended the conference just a couple of years after my stroke. It was an honour to be asked to go. After a busy day of workshops, I was very tired and looking forward to relaxing in my room in sweat pants and a tee shirt for the 

evening.

Before I got settled in, I went to the vending machines to get a Diet Coke, and then I realized something frightening: while I had a room key, I couldn't remember my room number (my short-term memory was never great to begin with, and the stroke really did a number on it for the first couple of years). I knew approximately what area of the floor I was on. Feeling very foolish, I started knocking on doors, looking for the woman with whom I was rooming to answer the door.

I only had to knock on two doors before I found my room. But the combination of the cane, the sweat pants, and the story about not remembering where my room was definitely (I believe) had one woman making the assumption that I was a "client", perhaps one of the self-advocates there for the conference, as opposed to staff, because her tone changed dramatically after I explained why I was knocking on her door. She started to talk to me like I was a child.

Not that there's anything wrong with being mistaken for a person that I support. But I found myself thinking, once I realized what was (likely) going on, "Do we really talk to them like that? Do *I* talk to them like that? How insulting."

Treating Intellectually Disabled Adults Like Children

I think that there are two issues that need awareness here:

1. There is a tendency (and I've observed this happening to other physically disabled people as well) to assume that if a person is physically disabled, they're also intellectually disabled. While there's nothing implicitly wrong with being mistaken for an intellectually disabled person, this tends to get annoying because....
2. People tend to treat intellectually people like they're children. They speak to them like they're toddlers, they talk "around" them instead of to them, and tend to ask to ask others questions about them ("What would he like to eat?")

The second tendency is dangerous because it reflects a belief about intellectually disabled people that's potentially very dangerous. If someone talks about an adult like they're a child, it's because there's something in them that believes that the adult in question is a child - and, depending on the relationship between the two people and what sorts of life circumstances are at play, that creates a power differential in which all sorts of abuse can thrive, even if it's unintentional.

But, Even More Fundamentally

We shouldn't be treating adults - any adults - like they're children.

Disabled adults have adult rights and adult responsibilities - they deserve the courtesy of being spoken to and treated like adults - whether they're physically disabled, intellectually disabled, or both, or whether you're just not sure.

There's no need to make any assumptions, really. The truth that all people deserve respect isn't an assumption.

Dave's post: http://www.davehingsburger.blogspot.co.uk/

"I Don't Care About You": Thoughts on Accessibility and Disability Sensitivity

When I see buildings with a low degree of accessibility...outdoor wheelchair ramps covered with accumulated ice and snow...buildings with power doors or elevators that aren't functioning...stores that use aisles as display space for merchandise, making the store difficult to navigate...I wonder if the people in charge of the building really realize what kind of message I, as a disabled person, come away with.

Accessibility...I Wonder...

I wonder the people in charge of these buildings with low degrees of accessibility realize that they might as well put up a sign that says (even if they don't really believe it), "Disabled people, we don't care enough about you as a potential customer/employee/volunteer to ensure that you can get into our building/get around it easily. Please take your money/abilities and expertise/time and community spirit elsewhere."

I wonder if they realize how frustrating and depressing this gets after a while, especially after saying to a store or organization several times, "You know, if you can't keep ice off of your ramp, you might as well rope it off, because it's useless to people in wheelchairs and it's just encouraging other physically disabled people to use it when it's not safe."

I wonder if they realize that inaccessibility sometimes makes me feel invisible in my own town, like people would just rather that I stayed at home and not bothered anyone with my needs. And I can handle low accessibility pretty well now. Plenty of people have much more trouble getting around than I do.

Accessibility is Good for Everyone

I wish that people would realize that universal design, accessibility and good disability sensitivity practices in businesses and organizations benefits everybody. If somebody in a wheelchair can get into a store and easily get around, so can a parent whose child is in a stroller, or a customer who has broken a leg and is using crutches. If the cashier asks at the cash register, "Did you find everything that you were looking for today?", a customer with visual disabilities who has trouble reading signs can ask where a product is, or a customer in a wheelchair can ask for assistance getting a product down from a high shelf. Or someone with no disabilities at all who just can't find what they're looking for can also get the help that they need. Everybody wins.

Autism, Accommodation, and Double Standards

I had an interesting online conversation about autism with a couple of women the other day. Let's call them Jane, Sally, and Betty, for simplicity. It all started with Sally talking about her  belief that autistic people need to do dominate the discourse on autism as they're the experts on their own experience (I do agree, by the way. Who better to talk to about the experience of being autistic, and the needs and desires of autistic people, than autistic people themselves?)  Jane agreed as well, but voiced a concern that some autistic people need to made aware of how they present to others to be sure they're not coming across as "snappy".

And we were off and running.

Oh, Online Arguments...

Online isn't the ideal place in which to have a discussion like this, especially with  four people involved. It was difficult to track who was talking to whom (and responding to what). Points and questions get lost. And, as in any medium where you can't see anyone's face or hear their voice, online words get taken in ways in which they weren't intended.

Not that I'm exactly sure anything was misinterpreted here (especially after seeing a more contentious continuation of the conversation the next night). Jane definitely didn't come across well, but I don't think that she intended, at least during the conversation in which I was heavily involved to sound insensitive. I think that she was perhaps only very minimally (at best) familiar with the autism acceptance movement, and with the idea of privileged groups in general. But, despite all my years working with disabled people and a not insubstantial amount of training, I wasn't aware of the autism acceptance movement. And privileged groups? I may have understood intuitively, to an extent, but I couldn't have explained it and I wouldn't have used those words. I certainly wouldn't have explained "privilege" anywhere near as brilliantly as Lydia Brown does here: 

http://www.autistichoya.com/2013/02/ableism-tone-police-and-hypocrisy.html

Lydia acknowledges in that post that most autistic people  "frequently do have communication and language impairments".  I've been doing a lot of thinking in the past few days about autism as a disability, and accommodation, and double-standards.

"I Know Better Than You What's Good for You"

Later that evening, I participated in my first "Tweetchat", hosted by Sally, about why autistic people feel the need to be acknowledged as experts about autism. I understand this. When you live with a disability day in, day out, it's difficult to accept that society doesn't consider you as much of an expert on it as a person who's done (granted, a great deal) of reading and research on the subject and has some letters after their name as a result. Especially since the the general orientation toward autism still seems to be that it's something to be cured, and that people with autism should be provided with supports that help them to become "less autistic". There's an assumption that autistic people *want* to reduce the behaviours associated with autism, so that they'll fit better into society (increasingly not the case).

In the earlier online conversation, Jane, who works with autistic people (she didn't say in what capacity) went as far to make the following arguments in favour of autistic people adapting the communication style to whatever extent they could to a tone that society found pleasing and reasonable, for the following reasons:

• It's good for them to try to adapt
• People l like it when tone matches words
• Since they're the minority, they should be trying to adapt to the majority
• I also read (whether it was corrrectly or incorrectly) an implication that if autistics are to expect any accommodation for communication difficulties (and that they really shouldn't) they really need to be first be sure that they are trying as hard as they can to adapt their communication style to appear "less autistic".

The Problem for Autistic People

The problem here is that society has has taken it upon itself to make a bunch of arbitrary rules for how autistic people *should* communicate (not necessarily the same "rules" that Jane laid out, but you'll find a bunch more in Lydia'a discussion on "tone-policing), and absolved itself of any responsibility to provide accommodation for what is a very real communication disability. Some will be able to adapt to a certain extent, some simply won't be able to. Some won't want to, because they don't see autism as something that needs to be "cured".

When I consider tone-policing and the pressure on autistics to appear "less autistic", and how they fit into my understanding of what disabled people should be able to expect, in terms of accommodations for disability, I'm confused and saddened.

I've never had said to me, as a disabled person, by non-disabled-people:

• "It's good for you to try to adapt; why don't you try picking up that pen with your right hand/walking to the store without your cane?"
• (I can't think of an example for "tone matches words" that I can apply to my disability. This was a very specific response to a point about how people should respond to content in a conversation with an autistic person, as opposed to how it's delivered)
• "You should be trying to use both your hands and walk without your cane because stroke survivors are a minority in society and minorities should try to be like the majority.
• "You shouldn't expect elevators or cleared outside stairs in winter unless you're doing every that you can to get better."

I can't think of anyone that I know that wouldn't agree with me that I shouldn't be denied use of an elevator based on how much work I've into recovery (or on how much I'm currently putting into it). Or that I should be trying to do things that are difficult for me, given my disability, simply because most people aren't disabled, or because someone else thinks it would be "good for me" to try (with the exception of  that person of some medical professionals on my treatment team who urged to try things to see if I could do them, to strengthen muscles, to reinforce neural pathways, etc.). People simply don't do the equivalent of "tone-policing" with me, and it would infuriate me (and a number of other people in my life) if they tried.

Why is it okay to do it to autistic people?

I don't know what level of accommodation and protection from discrimination autistic people can expect under the Americans with Disability Act. If it is indeed the same level that I can expect, it doesn't seem to me that society in general knows it. That's not right.

And if autistic people aren't getting adequate protection under the ADA, that's not right either.

I need to end this here and hope it makes sense...I've been trying to get my thoughts together on this all week. Not being autistic myself, I may be off-mark with some of it, and people should please correct me if I'm wrong...these are just my impressions.

I'll probably revisit this topic as I try to sort it all out...it's really got me thinking.

Better Off Dead Than Disabled?

About three years after I had my stroke, I went to a funeral for a friend's husband. He'd had a massive stroke. It was a stark reminder that not everyone's stroke story turns out as nicely as mine did. While I was waiting for the funeral to begin, I heard someone say, "Perhaps it was for the best. He wouldn't have wanted to live in a wheelchair for the rest of his life."

I remember feeling like I'd been shot. I knew the woman who'd made the statement. I knew she'd spoken without really thinking, as people often do at funerals. I knew that she hadn't meant the words to sound as callous to me, not long without my wheelchair, as they did. But I still couldn't help but wonder if there was a part of her that believed it.

It was my first exposure to an attitude that's unfortunately too prevalent: that you're "better off dead than disabled." And that was just a mild manifestation.

"I Made The Right Decision"

Stella Young is an amazing disability advocate. Feminist, journalist, and blogger for "Ramp Up" on the Australia Broadcasting Corporation's Disability Gateway website, Miss Young uses her experiences as a disabled woman and wheelchair user to write passionately and insightfully about the issues facing disabled people today.

The first blog of hers that I read was about genetic testing for disabilities. She told this story about society's belief in "better off dead than disabled":

"A few years ago I was approached by a nervous looking woman on a tram on my way home from work. "Excuse me," she said. "Do you have Osteogenesis Imperfecta?" With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it's because they know someone else with it. So I was surprised by her next line. "I was pregnant with a baby with OI and I had a termination." I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn't quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, "I made the right decision." Then she got off the tram."

I was horrified. I absolutely support a woman's right to choose - for whatever reason, even if it makes me sad. The idea of a woman choosing to abort a fetus just because of detected disability (and I acknowledge that perhaps this woman may have had other reasons as well, but that was not what she said, or even implied, to Miss Young) makes me sad, but it's still her right to do so. I don't support, however, marching up to someone with the same disability as the fetus and, unprompted and with no context, telling them the story!

"Who says that someone?" I told my friend over the phone later. "Who says to *anyone*, let alone a perfect stranger on public transportation, 'My kid was going to be disabled like you...I'm glad I had an abortion.'"

(Miss Young took this much better than I would have, by the way...read about it here: http://www.abc.net.au/rampup/articles/2012/10/09/3606293.htm)

Where does "better off dead than disabled" come from, and when did it become okay to express that idea to the face of a disabled person? Are we that unworthy in society's eyes of even the most basic level of respectful treatment?

Before You Dismiss That as an Isolated Incident...

Consider a series of tweets from a Twitter friend in the UK, using the hashtag #heardwhilstdisabled:

• "'If I were you, I'd kill myself' (perfect stranger, me happily waiting to cross road in powerchair on way to work)"
• (After some responses about how horrible this was)  "It was better than the drunk who shouted I should have been killed at birth as I went past the pub!"
• "Finally, the nastiest, shouted by drunk outside pub as went past in powerchair: 'You should have been put down at birth'"

It's worth noting that disability hate crime in England in Wales increased in 2011/2012 by 25% when compared to the previous year http://www.telegraph.co.uk/news/uknews/crime/9626664/Disability-hate-crimes-rise-by-a-quarter-in-a-year.html. Disabled people are not well-liked in the UK right now by the general populace. Cuts to income support for disabled people have been justified to the public with a government-supported media campaign insisting that the support system for disabled people is riddled with "scroungers", or people defrauding the system.

The actual fraud rate is less than 1%.  And this is just one of the lies that forms the foundation upon which the government has built its case for systematically stripping benefits from disabled people who cannot work and declaring them fit to enter the workforce.

But that's a whole other blog entry.

I Know That I'm Probably "Preaching to the Choir" With Most of This

Maybe you could pass this post on to a non-disabled friend or colleague and ask them, politely and gently, and with the promise of non-judgement and an open dialogue if they're interested in sharing their answers with you, to really consider these questions:

• Do you believe that you'd be better off dead than disabled? If so, why?
• Where do you think that this attitude came from?
• What would it take to change it?

It's hard for me to imagine how, even if all communities were totally accessible, that disabled people will ever be regarded as full community members, enjoying all the rights and privileges that non-disabled citizens do and having their contributions valued as equal to those of non-citizens, if the "better off dead than disabled" perception is out there. This is a fundamental issue that needs study and addressing.

I certainly don't feel that I'm better off dead than disabled.

So, who has ideas about how to change this perception?

If you're on Twitter, check out the hashtag #heardwhilstdisabled. It was certainly eye-opening for me.

Sexual Assault Travesty at Martin de Porres Academy

I've been in and around the social services field for a long time, given how old I am. I don't shock easily anymore. But  the story fifteen-year-old K.J., an intellectually disabled high Manhattan teenager, and her sexual assault at Martin de Porres Academy, shocked me.

Martin de Porres Academy is a school in Elmont, New York for juvenile offenders and students with special needs. According to her family attorney K.J. was sexually assaulted by three Grade 9 males in her science class last May. The assault lasted approximately ten minutes and took place under a desk. The males others forced her to perform oral sex and tried to sodomize her, while another male student danced on the desk  http://www.nydailynews.com/new-york/girl-15-gang-raped-class-suit-article-1.1238721http://www.nydailynews.com/new-york/girl-15-gang-raped-class-suit-article-1.1238721. She was hit on the head repeatedly when she tried to escape.

There are several things that make this horrific crime even worse:

• There was a teacher in the room.
• When she reported this to the school, they didn't report it to the police.
• Martin de Porres Academy eventually asked the police that the investigation that the family opened be closed and that they be allowed to handle the incident with "training and additional counseling". The family wasn't told for several months about this for several months
• The Nassau County District Attorney was apparently aware of the investigation as it was going on, but did nothing
• The investigation *was* dropped and the boys went unpunished

How did this all happen? Prepare to be even more disgusted.

Consent Issues

K.J.'s IQ is below 50, which in New York  is legally considered too low to consent to sexual activity. Other states have similar laws, and I'm in favour of them for people with IQ levels below a certain point. It's a safeguard against abuse from caregivers. However, an even more fundamental consent law didn't protect K.J., giving this case, as Judy Molland points out at http://www.care2.com/causes/rape-is-rape-unless-you-have-a-low-iq.html, a distinctly misogynistic feel.

K.J. told police that she told the boys "No" and "Stop". And anyone that feels that an IQ below 50 is too low *not* to express consent to something in which one finds physical and/or emotional displeasure or pain hasn't done much work with the demographic, because even non-verbal folks can express it with no question as to what the individual means.

There were 13 people enrolled in that science class at Martin de Porres Academy, and they can't have all been absent that day. Even if the Martin de Porres Academy teacher wasn't paying attention, there must have been other students witnessing this.  If K.J. said, "No" and "Stop", someone else must have heard it. And "No" means "No". I don't care if your IQ is 50 or 150.

However, the police apparently weren't interested in investigating whether someone else heard her say "No", because the boys that assaulted her all had IQs below 50 as well. This made the sexual activity consensual in their eyes.

Police: "It was not something you could arrest someone for"

Kudos to K.J.'s family for filing a lawsuit against Martin de Porres Academy in the Manhattan Supreme Court. The teacher who was in the classroom was fired but that's not good enough.

And good for family attorney Madeleine Lee Bryer for calling bullshit on the police department's stance that this wasn't something in which they should be involved. As she points out, one of the boys knew right from wrong to the extent that he was found culpable for robbery. That creates enough reasonable doubt to investigate to what extent they all recognized the inherent wrongness in what they did that day and how it affected their actions.

Even if their disabilities prevented them from understanding that what they did in that Martin de Porres Academy classroom was wrong, there's still no excuse for it. They don't get a free pass. Yes, the justice system has to handle that level of disability and that level of understanding a bit differently than someone with a full understanding of those kind of actions and their effects. But the crime still needs to be investigated fully and and dealt with in an appropriate manner.

All parties in this terrible story are entitled, as citizens, to that.  But none of them got it.

Martin de Porres Academy, the Legal System...Lots of Blame to Go Around

Why?  I believe it's because no one wanted to do a difficult investigation and do all the paperwork, ultimately. And because these teens are young, disabled (and, in at least one boy's case, a criminal), it was easy to get away with just sweeping all of this under the rug.

But there are four young futures on the line here (not that I'm trying to overly empathize with the boys, please don't misunderstand me...but they're still young teenagers. They did a *horrible* thing, but they still have futures), And the lack of regard by multiple systems for these kids, especially for K.J. right after her assault, makes me sick. Sick.

Well done, New York State. Between your group home scandals, your accessible taxi dramas, and now this...travesty at Martin de Porres Academy, you've thoroughly disgusted me.

More information: http://www.nydailynews.com/new-york/shrt-article-1.1262564

Oscar Pistorius: First, a Human Being

Sitting here with CNN's morning show on the other morning, waiting to hear whether disabled Olympian and Paralympian Oscar Pistorius was going to get bail (he did), I decided that it was time to write a blog post about him.

Unless you've been living under a rock for the last little while (or on a deserted island, which definitely seems inviting for me some days), Oscar Pistorius has been charged with the premeditated murder of model Reeva Steenkemp, his girlfriend. It's all given new meaning to the phrase "media circus", and I've heard about most of the major developments as they happen this week (over and over) because, with the time difference, the bail hearing has been happening all week as I've been getting up.

For Those Who Don't Know Oscar Pistorius

(I didn't, before I started writing this blog.)

Oscar Pistorius is a South African sprint runner with two below-knee amputations.  In 2012 Oscar Pistorius was the first athlete to compete in both the Olympics and the Paralympics. Oscar Pistorius is the runner pictured in the meme below, which some disability advocates consider "inspiration porn". I've definitely heard the word "inspirational" a lot this week, and the word "hero" as well. Many disabled and non-disabled people consider him a role model and proof that you can do anything you want to if you work hard enough (read why this sort of thing makes me uncomfortable here: http://www.girlwiththecane.com/musings-about-inspiration-porn/ )

Oscar Pistorius had been dating South African model Reeva Steenkemp since November 2012. She was found shot to death through a bathroom door in his home on February 13, 2013. Pistorius says that he didn't know it was her in the bathroom, and thought that she was an intruder.

A Long Way for Oscar Pistorius to Fall

I think that it's always a shock for people when someone that they really admire or that inspires them is charged with something like this. We tend to put our heroes on a pedestal and assume that they're not capable of terrible acts, and it's hard for us when they prove us wrong.

But I think that there's an extra layer to it when a disabled person disappoints us with their actions. I saw this a lot when I worked with intellectually disabled people, but I'd never really thought about whether I'd see the same phenomenon in physically disabled people. However, seeing all the tweets about how Pistorius could not have possibly done this, about how it all had to be an accident, a mistake...it's made me start to wonder.

Pistorus' disability seem to put him on a much higher pedestal than non-disabled celebrities from which to fall.

When Disabled People "Fall" Every Day

I once worked with a family that was shocked by a letter from their intellectually disabled son's school. The school wanted to talk to them about how he was bullying another student, and then lying to teachers about it.

"I can't imagine him bullying anyone," his mother said. She really did look broken-hearted. "And I really didn't think that it would even occur to him to lie,"

I stayed silent, really not knowing what to say. I didn't know how to tell them that I knew that their son lied to them about things that had happened at school. I didn't want to tell them that I'd seen their son bully other students and take great glee in it.

There seems to be an expectation in society that disabled people are all naturally and authentically nice, noble, honest, caring, fun-loving, and incapable of behaviour that hurts others.

Some are. Some are lovely to be around. Just as there are lovely non-disabled people with all these qualities who lovely to be around. I try to be nice to be around. Like the lovely non-disabled people, I sometimes have days where I'm not.

And just as there are non-disabled people who aren't nice to be around, some disabled people aren't nice to be around *at all*. They're grumpy, they lie, they're manipulative, they pick fights, and they bully others.

Sometimes it's legitimately part of their disability, and very difficult for them to control. Sometimes it's not. A family came to me one time and told me that their 16-year-old intellectually disabled teen was being very irritable and disrespectful, and not doing what they told her to.

"We'll try and get a behavioural consult, to cover our bases," I said. "But that might not be her disability...that might just be her being a teenager!"

Oscar Pistorius: The Point

Maybe Oscar Pistorius is as great a guy as his supporters want to believe. Maybe he's just a stand-up guy, and his story that he didn't know it was Reeva Steenkemp in the bathroom is absolutely true, and part of the tragedy of this story is that a young man is, for the rest of his life, going to have to live with the fact that he shot the woman he loved.

Or maybe he's a cold-blooded murderer.

For better or for worse, his physical disabilities have nothing to do with which it is. Because, above all things, he's a human being. Like all of us, he's capable of brilliant things, and also capable of horrible things.

The more we can keep this in mind as we listen to coverage of his upcoming trial, the more we'll be able to keep in all in proper perspective.

Twitter reaction to Reeva Steenkemp's death: http://www.globaltvbc.com/oscar+pistorius+reaction+on+twitter/6442809019/story.html

Kim Stagliano and the Autism Question

I recently read an interesting personal reflection by Kim Stagliano of the Huffington Post about raising her three children with severe autism. She was talking about going with the oldest of them to be made power of medical attorney for the young woman, and about the overwhelming realization that she'd likely always be a caregiver.

"Do you have a standby guardian you can lend us?" she writes, regarding her struggle to figure out who would take care of her girls should she and husband not be able to.  "All it requires is 24/7/365 love, care, attention, physical presence, complete ability to make every decision and about 1,000 other responsibilities." It's a very difficult question to ask. I know from my work doing transition planning with families that many don't ask it because it's just to difficult to answer.

Kim Stagliano had some strong words for those that believe in autism acceptance, as opposed to autism cure. While she acknowledged that " if you do not want prevention, treatment or cure for yourself or your own child -- that is your right", she also talked about being made to feel like a bad parent for wanting those things for her children.

"Those who do not acknowledge and fight for change for the real struggle of families from coast to coast can kiss my polenta," she says.

I agree.

With the last quote, at least.

Kim Stagliano and Families of Children with Autism - Overwhelmed and Undersupported

I've worked closely and over several years with a few families with children with autism like Kim Stagliano describes - autism severe enough that the child has difficulty performing activities of daily living independently, exhibits behaviours that makes him/herself and/or others unsafe, and that makes almost constant or constant supervision necessary. These aren't the clinical factors that determine whether autism is "severe" or "not severe", but they are the things that wear parents down, little by little, until I found myself saying things like:

"I'm more worried about you than your son right now. Let me get you a referral to a counselor."

"If you cry in the meeting, don't worry about it. You've been upset about this for a long time...that's why we're having the meeting, right?"

"I know that the last thing you need is to fill out another form, but this is the next good step to take."

"The only way to do this is plan as best as we can and then take things one day at a time. Are you at a place where you can handle that right now, or do we need to bring in some more resources?"

I marvel at the tenacity of parents of children with severe disabilities, who find the strength to keep facing the challenges that they do, every single day. Because in a world where opportunities and funding for adequate respite by well-trained providers continues to be slashed, supported community integration for people with disabilities through agencies becomes harder to come by, trained support in schools (and therefore opportunities for learning academic, life, and social skills) disappears as school budgets shrink, community health supports that allow people with disabilities to live independently are cut, and community residential living placements become fewer, it's little wonder that parents are feeling crushed by not only the responsibilities of caregiving, but the question of what their child will do when they are no longer around.

But this is where Kim Stagliano and I start to see things differently.

Kids First

I'm uncomfortable with the idea that people with disabilities need a "cure" in general, which I guess puts me in the autism acceptance camp. I don't think that it healthy for parents to pretend to that there's no stress involved in caring for a child with severe autism, or that anyone should suggest minimizing any negative feelings that it may bring up. But kids with autism are kids first, and until there's a day when there is a cure and really something to argue about in terms of "Should I accept autism or should I accept a cure?", the answer seems obvious to me.

Bottom line, kids with disabilities are still kids, and they should be kids first, above all else. Our primary focus (as their parents, family members, educators, support people, etcetera) should be the same as it should be for any other kid: ensuring that they get what they need from their homes, schools, and communities to thrive and to become, to the greatest extent possible, citizens that contribute in positive ways to their communities and to society at large. It seems much more constructive, to me, to assist kids to get to this place by taking the resources that are available and tailoring them to meet an individual's particular strengths and weaknesses and gaps in supports, rather than spend a lot of time saying, "But things would be so different if only my kid didn't just have autism."

That Being Said

I don't know how many resources Kim Stagliano has access to.

Kim Stagliano sounds exhausted, and who wouldn't be? She's been in an incredibly tough, thankless job for eighteen years. If where she lives in anything like Ontario, any meagre funds that she'd received for vital respite or for enrolling the girls in community activities, or for even something as simple as hiring a housekeeper to come in for an hour a week to help her out have been slashed. Unless she's had the girls enrolled in a very progressive school, she's likely had to fight for her girl's rights over and over, and she's probably tired of it. When I worked as a Transition Planning Advisor, I'd have gone with a parent like Kim Stagliano to get a Power of Attorney signed, for moral support; we'd have hashed out some of these tough questions like "standby guardian" together.

Kim Stagliano's idea of helping families of children with autism appears to be putting money into finding cure, I'd rather see money go into putting supports in place that lessen the stress on families of people with autism and that assists people with autism to thrive in community settings.

But would I demonize Kim Stagliano for how she feels? No, no for a second. I always got to go home from my job from the end of the day; she's a parent 24 hours a day, 365 days a year. I can't truly know how she feels, and I don't have the right to judge her. I'm sorry that she's felt felt judged for her position on this issue.

Kim Stagliano's reflection: "Autism Sucks and Then We Die" http://www.huffingtonpost.com/kim-stagliano/autism-research_b_1926901.html