Tag Archives | assumptions

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 assumptions(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/

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Encore Post – Work and ODSP: The Case for Providing Choice

This is a reblog of a post I wrote about working while on ODSP. I have some more things that I’d like to say about it, and wanted people to see this post for context. Back with new content by Monday at the latest. :) – Sarah 

When I first started volunteering with people with intellectual disabilities, long before myODSP brain avm and surgery, I was perplexed as to why the people on ODSP that the agencies supported didn’t work more.

Shouldn’t Everyone, Even Those on ODSP, Work if they Can?

I knew that many of these people were on Ontario’s government support system for people with disabilities: the Ontario Disability Support Program (ODSP). I knew that you could only make a certain amount of money each month before your earnings started to affect how much you got from ODSP each month. And I knew that many people with disabilities were highly motivated to stay on the ODSP program because ODSP provides medical benefits that most jobs that a person with intellectual disabilities would not be able to obtain.

However, being still in my teens at the time and being blessed (cursed?) with an over-developed sense of fairness, I wondered why, if these people couldn’t work for pay, they didn’t volunteer more. There were definitely places in the community that were happy to have them volunteer.

Why did I have to go to school all day, 5 days a week during the school year and then spend 5 days a week working all day, and my parents have to work all day, every day to keep my family going, when the people that I was volunteering with could simply decide that working wasn’t something that they wanted to do, and sit around and collect a cheque?  The question festered in the back of my mind. I know that it festers in the back of many peoples’ minds.

A Change…but Why?

Fast forward years later, after the brain AVM and the surgery, to working with youth with intellectual disabilities. Not very many of the youth with intellectual disabilities that I worked with decided that they didn’t want to work when they were done school, but there were a few who did. I counted them as successes in my program, because, even though they weren’t out and doing something, they truly were doing what they wanted to be doing. I’d have rathered that they be out and working, because I knew they were going to get bored very quickly, but it wasn’t what they wanted. So we planned for them to be home.

I hadn’t resolved for myself why this had become “okay” for me at this point, except that I now strongly believed that people should be allowed to choose what they wanted to do in life – no matter what I, or anyone else, thought they “should” be doing.  It wasn’t until a debate on an internet  message board with somebody who thought that people with intellectual disabilities shouldn’t be getting any help from the government or government agencies at all, that volunteer service would more than provide for their needs if we’d just let it (*that* particular conversation got me right riled up, let me tell you) that I sat down with a pen and paper and worked out for myself exactly why I felt income support for people with intellectual disabilities was necessary and why I thought they had every right to decide exactly how much or how little they wanted to work while they were receiving it. That cemented my change of heart about what people on ODSP should/should not be doing.

When It’s Not Your Fault that You’re Not Wealthy Enough to Choose…

People who get to the point where they can decide how much they want to work usually do it in one of two ways:  They come into adulthood independently wealthy (or, by some twist of fortune, become independently wealthy), or they work really damn hard to get to the point where they can retire early or at least take a reduced schedule…and you have to have a fairly high-paying job to allow you to do this.

People with intellectual disabilities generally don’t have the option of going to school to get the education required to get a really high-paying job that’s going to allow them to retire early, or have a lot of money to invest. You can’t invest while you’re on ODSP.  In fact, you can’t have more than $6000 in your bank account at a time when you’re on ODSP, or you’re cut off.  The money you get is for survival, not for building a future.

It cuts down the options. No savings. No education. They can’t make the choices we do, because they don’t have the monetary resources to make those dreams a reality, nor the options of going to, say, college or university to get better-paying jobs.

In fact, for some people, meeting their basic needs on their monthly ODSP allotment is a dream that they can’t make a reality.

Once I realized how far behind the eight ball not just people with intellectual disabilities, but people with disabilities in general are in society, it made me look with more patience and compassion on those who chose not to find work while on ODSP. I did choose to work. But I’ve been blessed with a good education and very supportive family and community to help fill in the “gaps” that have made working difficult for me; not everyone is so lucky.

I’m not trying to be negative; I sometimes just need to acknowledge the realities of the world that we live in.

I like to believe in the hope of fabulous things even in disappointing times.  I hope you do too. :)

Have a great weekend…

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“Disturbingly One-Sided” – Annette Corriveau and the Right to Kill

I wondered why I was hearing Robert Latimer’s name recently. It turns out that on Friday there will be vigils Annette Corriveauaround the United States, in cities including New York, Washington, Chicago, Boston, Tampa, Fla., Fort Worth, Texas and Portland, Ore.,  for people with disabilities who have been killed by their caregivers. But it’s been the profile of Annette Corriveau on “16 x 9″, a program run on Canada’s Global Television Network, that’s put Latimer (and the question of “mercy killing” for people with severe disabilities) in the spotlight in Canada again.

For those that don’t know Robert Latimer, he was convicted of second degree murder when he put his daughter, Tracy, in the cab of his pick-up and killed her using carbon monoxide. Tracy was twelve years old and had severe physical and intellectual disabilities due to cerebral palsy. Robert, convinced that she was in unendurable pain, said that he didn’t want her to have to deal with it anymore. Normally a second degree murder conviction carries a life sentence in Canada, but he was released from prison with life on parole in seven years.

Annette Corriveau, according to “16 x 9″, is very much where Latimer was when he made the decision to kill Tracy. She wants to right to kill her two adult children, Jeffrey and Janet, both living with severe disabilities due to San Filippo syndrome and institutionalized for most of their lives. She made the decision that this is what she wanted to do when it became necessary to feed them via feeding tube so that they won’t choke. She doesn’t believe that they would choose to live like this, so she would like the legal right to end their lives.

Annette Corriveau and Robert Latimer Got to Speak…

I get that it’s very difficult to watch your child’s health and abilities keep deteriorating, especially when they’re in pain. Tracy was having seizures that routinely disconnected her hip. It had to have been terrible.

And I know that there’s little support in every way in Canada for caregivers of people with disabilities. There’s very little respite money or opportunities available. Supports are being cut back everywhere. The struggles are difficult to talk about. It’s a tough, often thankless job.

Additionally, for parents who are looking after children with severe disabilities, there’s always that mourning for the dreams that they had for the child. That’s why I’ve always liked “Welcome to Holland”, a story with which I’m sure many of you are familiar. http://www.our-kids.org/Archives/Holland.html

I recognize that this sort of parenting is very difficult, and empathize with the parents. However…

Who Speaks for Jeffrey, Janet and Tracy?

The “16 x 9″ profile was, as anti-euthanasia activist Alex Schadenberg said, “disturbingly one-sided” http://alexschadenberg.blogspot.ca/2012/03/taking-mercy-case-for-euthanizing.html  . It was riddled with ableist language and assumptions. The staff that work with Jeffrey and Janet on a daily basis, that would be able to testify to the ways in which they communicate, were not interviewed.  The reporter did not challenge Annette Corriveau at all on her conviction that her children do not want to live the way they are (just because she felt that she would not choose to live if she was living that way), or ask if she’s worked with the facility in which they live to take steps to make their lives more “bearable”.

For example, it was brought up several times that Janet has not left the facility in over 20 years, but the reporter never asked Annette Corriveau if she’d worked with the facility to try and arrange some trips out into the community.

The documentary obviously took the stance that what had happened to Jeffrey and Janet was horrible and that no one could blame Annette Corriveau for thinking the way she was, like she was the victim of some cosmic tragedy that no parent should have to endure…and therefore jusified in stopping her pain in whatever way she could.  After all, as the reporter pointed out, more than half of Canada and most of the jury actually supported Latimer’s actions while the trial was going on.

I find all of this profoundly disturbing.

Reporter: “Is any of this about you?”

Listening to the interview with Annette Corriveau, and the interview with Latimer that was included in the segment, I had no doubt that these parents love their children. But I don’t buy that Latimer killed Tracy (at least solely) to ease her pain, or that Annette Corriveau wants to kill her children out of concern that they wouldn’t want to live that way. I think it’s more about parents that can’t stand dealing with the pain that their childrens’ “suffering” causes *them*. And when you don’t know how much someone is actually suffering, or what they’d like done about it (in Tracy’s case, at her age, no responsible clinician one would even have thought of asking her “Do you want to die?” if she’d not had an intellectual disability)…it’s just plain wrong.

Ask, don’t assume.

All people deserve the dignity of making their own life choices. No matter how *you* feel about what living their life must be like.

I can only be empathetic with the Robert Latimers and Annette Corriveaus to a point, and frankly I’m glad for it.

The whole “16 x 9″ segment is available for viewing here:

http://www.globalnews.ca/taking+mercy/6442597182/story.html

See the Council of Canadians with Disabilities’ response to the program here:

http://www.ccdonline.ca/en/humanrights/endoflife/euthanasia/letter-to-global-26March2012

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New Abortion Laws in the US

new abortion laws
It’s not particularly light reading for a Friday, and for that I apologize. But given the high rates of sexual assault on women with disabilities, I just didn’t feel that I could let the week pass without some comments on the new abortion laws introduced in the United States this week.

Let’s Start With Virginia

Virginia governor Bob McDonnell signed a new abortion law stating that women undergo an ultrasound procedure before having an abortion. It does not have to be the transvaginal ultrasound that the bill originally proposed, which is extremely invasive and potentially retraumatizing for women who have been assaulted. But, in the name of having all the information possible to allow them to make an informed choice, some sort of ultrasound procedure is now mandatory.

http://www.cbsnews.com/8301-503544_162-57392796-503544/virginia-gov-bob-mcdonnell-signs-virginia-ultrasound-bill/

On to Oklahoma

The Oklahoma Senate approved a bill this week that says that doctors can now inform women that they have the right to hear the heartbeat of the fetus before the abortion is performed.

http://www.reuters.com/article/2012/03/07/us-oklahoma-abortion-heartbeat-idUSTRE82609J20120307

Implications of the New Abortion Laws for Women with Disabilities

I can hear people asking what the problem is with new abortion laws that put in measures that make sure that women are truly sure that they want to have an abortion before it happens.

My problem with the new abortion laws in the context of women with disabilities is two-fold:

My first problem with these new abortion laws is actually the same as the problem that I have with them for all women in general: There’s an assumption that when the woman shows up at the clinic that she hasn’t already done an amazing amount of thought and soul-searching over her decision and arrived at a painful conclusion that this is the right choice.

If any woman with an intellectual disability that I worked with become pregnant, especially as a result of an assault, I would have explored *all* available options and the pros and cons of each with her, keeping what I would have done in her shoes out of the process. And if she’d chosen abortion, there would have been extensive prep on the implications of her decision, what she could expect, and why some women sometimes change their minds before they go through with the procedure. I would *not* send her in there unprepared and wouldn’t think much of any person who would.

My second problem with these new abortion laws is that these tactics are manipulative. I would assist a woman with an intellectual disability who wanted an abortion to truly understand what she was agreeing to before she went in. I would *not* resort to manipulative tactics designed to confuse her at the last minute. That’s unfair, particularly to a woman with a disability that’s affecting her reasoning or her emotions (like some serious mental conditions).

Let me be clear about this: It’s not fair to any woman.

It’s another assault on the vulnerable ones.

Abortion is still legal, so quit trying to manipulate women out of it, and reduce it by addressing the problem at its roots – finding ways to lower the phenomenally high rates of sexual assault on women with disabilities would be a good start. Put good, solid sexual education for *everybody* (including students with disabilities) in the schools. Settle this birth control issue once and for all in favour of women and their health.

Oh, if only I ran the world… :)

*Correction: I put this in yesterday, and I don’t know why it didn’t take. A reader informed me that the Oklahoma law actually *requires* doctors to inform the woman that she has the right to hear the heartbeat (even worse, to my mind). Thank you for pointing out my error, David.

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Disability and Religion, Part One

Celebrating Disability and Religiondisability and religion

When I was in high school, and a devout Christian, I was a counselor at a Christian camp one summer. One night, after evening prayers with the campers in their cabins, one of the other counselors came to staff area, terrible excited: a little boy with Down’s Syndrome in his cabin had prayed the Salvation Prayer and invited Jesus into his heart. It wasn’t my first experience with disability and religion. A couple of adults with intellectual disabilities went to my church. But it was the first time in my evangelical Christian life that I’d ever really thought about people with intellectual disabilities consciously deciding to become Christians.

We all thought that this boy praying the Salvation Prayer was miraculous. Somehow the message we’d been trying to get across all week through daily worship services and in-cabin devotions had reached this boy with a disability and now he was definitely going to go to Heaven. It was something to celebrate!

I got a little more cynical about the experience as I grew up. Like many things about Christianity, I wasn’t sure what to think about disability and religion, and especially about that experience at camp.

Becoming Cynical About Disability and Religion

It had been quite late in the camp session when that boy prayed the Salvation Prayer. Many kids around him had done so during the session and gotten a lot of positive attention attention for it. It was very easy to tell that it was an easy way to please the counselors and staff. And, because of his disability, the young boy got even more positive attention from everybody than the other kids did. I wondered, in the cynicism and anger that threatened to overwhelm me when I first left Christianity, if we’d asked him to do it again that session, how easy it would have been to get him to do it again.

And I was angry. I felt like we’d taken advantage of a kid who hadn’t fully understood what kind of commitment he was making. If that was the standard relationship between disability and religion, I wanted nothing to do with it.

I’m a lot more mellow now about disability and religion. I ask questions that, because of where I was, I don’t think I could have asked. Now I not only can ask them, but I want to. And now I ask myself about that summer experience: Could that boy have understood enough to make what we’d consider an informed decision about becoming saved?

Or, more importantly: Did he understand at least as well as the other kids?

I think he was eight. That age sticks in my mind, at least. I was seven when I first prayed the Salvation Prayer. I only did it because my friend in Sunday School was doing it, and I was totally confused when it was over. I asked the Sunday School teacher, “Will Jesus be in my heart by bedtime?”

She laughed and said, “He’s in there already, dear!”

“Oh,” I said. I remember being totally unsure as to whether I should be excited or not. I really didn’t understand what I’d just agreed to.

Maybe none of the kids who prayed the Salvation Prayer understood that summer. Maybe they did – maybe, at age seven, I was the odd man out because I didn’t get it.

I just assumed that the kid with Down’s Syndrome didn’t get it. I let that become part of some major bitterness toward Christianity that stayed with me a long time. Even if he didn’t get it, I’ve definitely seen evidence that kids with intellectual disabilities, just like the rest of us, have a sense of God that evolves with age.

Talking About Disability and Religion

A few teenagers with intellectual disabilities that I worked with really surprised me with how much they’d thought about religion and spirituality. One of them wanted to talk about the DaVinci Code movie with me, and about how he thought that his parents didn’t want him to watch it because they were scared that he wouldn’t want to be a Christian anymore.

“Are *you* scared that’s going to happen?” I asked him.

He wasn’t. But he wanted to know more about different religions. He was curious about them.

Another young woman wasn’t sure that she wanted to go to the church her parents went to when she moved away from home, and wasn’t sure how to talk to her parents about it. We talked about some things some ways that she could have that conversation with her parents, and how she could explore other churches if she wanted to. I was surprised by the amount of thought that she’d obviously put into why she wanted to take these steps in her life and how important it was to her, spiritually, that she make her parents understand why she was feeling this way.

And I’ve always known some adults with intellectual disabilities for whom participation in a church and church life is very important – and others for whom it just isn’t. Just like people without disabilities. As someone who is still very fascinated with why religion and/or spirituality comes to play the role it does in peoples’ lives…I just think it’s interesting.

When these conversations come up, it’s like a smack in the head: Don’t make assumptions, particularly about disability and religion. Figuring out what I believed and why took me about six years after I graduated from high school, and nearly knocked me off the rails a couple of times. It was an integral part of my struggle to figure out who I am. Why wouldn’t there be people with intellectual disabilities that go through the same thing?

More About Disability and Religion…

I’ve never talked with anyone with autism about God and disability and religion but I recently heard a radio program called “Tapestry” about how some people with autism view God that was really fascinating. It was what got me thinking about all of this. I’ll talk about it more tomorrow.

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Supreme Court Ruling on Testimony from People with Intellectual Disabilities…It’s About Time!

A Supreme Court ruling in Canada is going to change the experience of people with intellectual disabilities in Canadian courts.

The ruling was made as the Supreme Court gave a woman with an intellectual disability a new trial after her testimony about an alleged sexual assault was dismissed.

http://www.canada.com/Mentally+disabled+victim+alleged+assault+gets+trial/6134861/story.html

Supreme Court Ruling Offers More Protection to People with Intellectual Disabilities

The Supreme Court ruling is extremely important.  Up until now, the Canada Evidence Act has put restrictions on how the testimony of people with intellectual disabilities can be used in court. Judges had the right to assess competence of a person with an intellectual disability and rule Supreme Court rulingwhether or not his or her testimony was admissible. This goes beyond the standard required for anyone else to testify: that they be able to communicate their story clearly, and that they promise to tell the truth.

I have never supported an individual to testify in court before, but I have supported individuals to make reports to the police. We talked beforehand about how it was important to be very honest, to tell the story exactly how they remembered it happening, and to answer the officer’s questions as best they could. I can tell you from working with many, many people with intellectual disabilities that they know the difference between “telling the truth” and “telling a lie”, and that, like most of us, most of them feel quite strongly that telling a lie is wrong.

So I found myself nodding when I read Chief Justice Beverly McLachlin explain that when an individual with an intellectual disability testifies, the promise to tell the truth should be enough. They should not have to demonstrate understanding of the moral obligation that the promise confers upon them (i.e., explain in concrete terms what taking an oath morally obligates them to do) – they just have to take the oath and be able to tell their story.

Of course, not all people with intellectual disabilities will be able to testify. Some will not understand that they have to tell the truth. Some may have a mental condition as well as an intellectual disability that doesn’t allow them to distinguish fantasy from reality. But the stereotype that all people with intellectual disabilities cannot understand the difference between a truth and a lie and therefore shouldn’t testify is no longer an issue. Now an individual is *competent* to testify under the law until proven otherwise, instead of *incompetent* until proven otherwise.

This makes all the difference in the world. It gives people like the woman  who got a new trial, who was trying to take her sexual abuser to court, a lot more protection under the law.

Legitimate Concerns About the Supreme Court Ruling?

Too much, the dissenting Justices said of the Supreme Court ruling, holding fast to the idea that if you can’t explain why it’s important to keep a promise to tell the truth, the power of that promise becomes so diluted that it really offers the accused no protection at all.

There were three dissenting judges out of the nine who voted. They were also concerned, according to one article that I read, that when asked questions about her daily life and routine, the woman who got a new trial answered “I don’t know.”

I don’t think that this is necessarily a sign that she’s not fit to testify, or doesn’t understand the gravity of testifying in court. That could be simple nerves, and it would have been unfortunate to have voted down this Supreme Court ruling because the person had nerves.

Support Measures for the Supreme Court Ruling

Now that the ruling has passed, provincial governments may want to consider some sort of support process in place somewhere in their social services infrastructure to assist people with disabilities who do have to testify to become more comfortable with the courtroom and its processes before the actual day:

  • Provide someone to be a sort of case-manager, to assist the person’s lawyer to get them prepared for court and to be a person to whom the person can have easy access in times of anxiety about testifying. This person could help with the points below.
  • Go with the person on a visit to the courtroom to view a portion of a trial. Familiarize the person with courtroom procedures. Watch a person testify.
  • Arrange to have the person talk to a person who has testified in court, to answer their questions.

It’s important that the legal and judicial system take all possible steps to successfully implement this new Supreme Court ruling. As Carol Goar said in her “Toronto Star” column, this sort of ruling should have come into place twenty years ago when the Charter of Rights and Freedoms was enacted. We owe it to the people with intellectual disabilities who weren’t protected before the Supreme Court ruling for all that time to make sure that people with intellectual disabilities are protected now.

For more on this story:

http://www.thestar.com/opinion/editorialopinion/article/1131454–supreme-court-ruling-gives-canadians-with-mental-disabilities-full-equality-in-court

http://www.theglobeandmail.com/news/national/top-court-orders-new-trial-in-sex-attack-on-developmentally-challenged-woman/article2334451/

 

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Information Accessibility – Information for Everybody

Information accessibility issues get very little, if any, attention.information accessibility

Information Accessibility

We’re all familiar with physical accessibility issues, and we’re becoming more familiar with accessibility issues around hearing impairments, visual impairments, and even web design accessibility. But we’re only starting to learn, it seems about making information accessible (which can use elements of all other types of accessibility).

Let’s look at this example: Getting information about the Ontario Disability Support Program

  • Even finding the phone number in a phone book would be too much for some of highest-functioning (for lack of a better term) people with intellectual disabilities that I’ve supported to find without some assistance.
  • The voice mail system at ODSP makes you key in an extension based on the first letter of your last name. You have to listen carefully, because the letters are not presented sequentially (for example, you may have to key in a certain extension if your last name starts with A-L, Q, T, X or Z). Most times, the call goes directly to voice mail.
  • ODSP does have a web site, but it’s confusing to use and provides limited information on the program. You are referred to your local office, which can be difficult for people to ascertain.
It’s confusing even for people without intellectual disabilities.  It’s not good “information architecture”, as they say in the technical writing world. Depending where you are, other factors make the information even more difficult to access.

Different Region, Different Information Accessibility Needs

I remember going to quarterly regional meetings of the transition program in which I once worked, hearing about the fabulous things that everyone else was doing, and thinking, “That just won’t work where we are.” I wasn’t trying to be negative. I just saw us facing different access challenges, as a very small town, than the people from larger centres did: no public transportation, lower literacy rates, fewer people with internet access in the home…it affected the way families that I supported understood their options for their children once they graduated, and often it meant an intensive level of support for some students and families. I felt like we did things differently than the programs in the larger centres, out of necessity, because needs of students and families were different.

Those Darn Assumptions

Which isn’t necessarily bad.  But there are assumptions out there now that *everyone* has internet access and knows how to use it effectively. A number of factors may make this simply not true, and it keeps people (and not just people with intellectual disabilities…if I’m having trouble getting what I need from a government website, then other people are people are as well) from getting information that 1) they’re entitled to and 2) that they need.

It creates inequalities, and therefore needs to be addressed, whether it’s through providing more support to assist people to understand information to or restructuring information architecture so that it makes information more accessible and understandable…or both.

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Lost a Limb…Regrow a Limb?

Hello again!  I hope that everyone had a great Christmas and that you’re all looking forward to New Year’s!lost a limb

I spent Christmas with my family, at my sister’s house. I got lots of opportunities to play with my little niece and work on my techniques for making her smile and laugh, holding her the way she likes (so that she can see everyone), and picking her up. I’m very aware that there are many childcare that skills I that I haven’t yet mastered, but with each visit with her I feel more and more confident about my ability to look after her using one arm.

I think that’s why I’ve been a bit grumpy about a commercial that I’ve been seeing on television recently. It’s one of those commercials where people with various ailments and their doctors talk about how “We *will* find a cure for ____” (cancer, diabetes, etc.), and of course I know that these research efforts are very important. Besides my AVM (which is not supposed to be hereditary, but I’ve stories that suggest that they do seem to run in families), women on my mother’s side tend to die young from cancer, and there’s stroke and diabetes on my father’s side…it’s not exactly comforting.

Lost a Limb? We Can Cure You!

The part of the commercial that annoys me is when the young doctor comes on and says, “We *will* find a way to regrow limbs.”  Granted, I haven’t lost a limb, but I pretty much live one-handed, and I don’t feel like I miss out on a whole lot. I actually wrote about this in article right before Christmas, about how I’d once talked with a woman online who couldn’t understand why her blind date hadn’t told her before their date that he was missing a hand. I suggested that perhaps he was fine with the fact that he was missing a hand and didn’t see any need to tell her. But clearly she’d had a problem with it.

When I hear things like, “We *will* find a way to regrow limbs,” I feel the same way. I feel like it’s society saying to people who have lost a limb, “We have a problem with you being like this, so we are going to cure you,” when many of these people may not a problem at all with how they are living.  Society has the problem with the disability, not the person living with the disability.

Lost a Limb: Accessibility Woes

Not that navigating society without a limb isn’t difficult, particularly if one has to use a wheelchair. However, much of that difficulty with being in a wheelchair happens because accessibility is so slowly becoming a priority.  I can speak from experience on this one…it’s not so miserable being in a wheelchair when buildings, spaces and transportation are accessible. Again, it’s been society’s problem with people with disabilities that’s made having disabilities difficult. Thank goodness that’s changing.  It will be interesting to see whether medical science can regrow a limb by the time that all Ontario buildings have to be physically accessible (2025).

Lost a Limb, But Still OK!

I’m fine with having little function in my left arm and hand. There are some things that I obviously can’t do, but I manage. I went through a process of becoming fine with who I am with those impairments, as I imagine I would if I lost a limb.

Perhaps some people would welcome medical interventions that took away their disabilities. I’m not saying I wouldn’t try an intervention myself if it could bring back a lot of function in my arm and hand. But the blanket assumption that all people who have lost a limb want/need to be “cured” bothers me. It suggests that they’re not good enough, or can’t have productive, fulfilled lives,  the way they are right now.

And that’s simply not true.

 

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Another Way of Looking at Group Home Closures

Group homes for adults with intellectual disabilities are closing across Canada and the group homesUnited States as a cost-cutting measure for agencies. For some families, losing group home support has already thrown them into a caregiving crisis as they adjust to having a family member who previously lived in a group home at home. But some of these crises are also opportunities for individuals, and families and agencies need to fight to make sure that governments see that and provide adequate support for individuals who have moved into other living arrangements. Because it was the assumption that people with intellectual disabilities couldn’t live in community settings that left them in institutions for so long, and we all know how wrong that assumption was.

Group Homes: Little Institutions

It wasn’t until I actually got some experience in a group setting myself through school that I realized how close they were, with no intention from staff or agency to them being that way, to little institutions themselves. When one or two staff is responsible for five or six people on a shift, there’s no way, in what each resident is supposed to consider his or her own home but has been declared to need staff assistance or supervision, lives on the agency’s schedule and the needs of the house. Dinner is what the staff makes and when the staff makes it. Bedtime is when staff says it is. Outings are when staff has the time. And, as we’ve seen in the recent investigations of the New York State group homes, it’s easy for abuse to go on in these environments.

But What to Do?

I’m not trying in any way to suggest that it’s easy to look after an adult child or sibling with intellectual disabilities full-time at home. There are issues involved with this: supervision (particularly when safety is an issue), care, and helping the individual to construct a meaningful day. But I think we need to ask ourselves, not just because group homes are closing more and more but because sometimes we make an assumption that a group is what the person needs when it may not be…is a group home the only option? Is there another living setting that could work?

For example, if the person doesn’t want to live at home but doesn’t quite have the skills to live alone yet, is there another family that they could pay room and board with, plus a little extra for some support with things that they find difficult to do (laundry or bill paying, etc.) Some agencies help families to set up placements like this.

Or if the person is living at home, what community supports are there to assist with caregiving? Some that may be of help are:

- nursing/supportive housing programs
- day support programs
- adult respite programs
- support workers
- informal support networks such as family and friends

Government funding for these sorts of things is unfortunately low right now right (at least in Canada. It’s a time to be creative, to network with other families, and to pool funding when possible to get the most out of supports. And a time to let your government know that if it expects you to have an individual in your family with a disability of any kind live at home with you, you need the support to make that happen.

The most important part of all of this is our attitude toward this. We can choose to look at people with intellectual disabilities having even closer ties to the community than group homes can give as a burden, or as something worth working toward. I told the teens with which I worked, “Assume the resources are there and that we just have to find them.” I’d rather look at the group home challenge this way, and hope that other agencies will as well as they plan to move people out of the group homes that are closing.

And, of course, that we’ll all continue to advocate for as much support for families as possible.

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Lessons at Lunch

I caught up with a friend with an intellectual disability over lunch one day last week.chaz bono We hadn’t seen each other in a while, so we talked about a lot of things, among them the fact that she won’t be watching “Dancing With the Stars” next season. It’s one of her favourite television programs, but she’s upset about the way the judges have “teased” Chaz Bono for being overweight.

Chaz Bono and the Media

I’ve blogged here about “Dancing with the Stars” and the ignorant way the media’s treated Chaz’s decision to have gender reassignment surgery. http://www.girlwiththecane.com/bullies/ I don’t watch DWTS myself, but entertainment news filters through to me (usually). I think that Chaz Bono has handled himself with a great deal of class and dignity, being in the spotlight through the whole process and then going on DWTS despite public objection based on ridiculousness such as, “He’ll make our children want to change genders.”

I’m Not Perfect

I made two errors in talking to my friend about this: I assumed that she’d misunderstood the gender re-assignment issue, and I assumed that I knew more about what was going on in the show than she did (even though I haven’t been watching the show!) Actually, the judges have been denigrating Chaz Bono because of his weight:

http://abcnews.go.com/blogs/entertainment/2011/10/chaz-bono-dancing-with-the-stars-judges-treat-overweight-men-women-differently/.

But I, assuming that I knew more than her, I explained that they were really making fun of him because he used to be a girl. And boy, did I feel silly (and humbled) when I did some research and discovered how upset Chaz has really been about the names the judges have called him: Ewok, penguin, and basketball.

Lessons for a Monday

So, Lesson #1: Don’t make assumptions. I’m pretty good at not doing that in my work, but obviously sometimes I need a reminder.

My friend took the news that Chaz used to be a girl totally in stride. “They shouldn’t make fun of him for that, either,” she said. “They just shouldn’t be making fun of people for who they are.”

“You’re right,” I said. “It’s none of their business.”

“That’s right!” she said. “I hope that Cher sues them!”

Lesson #2: Accept people for who they are. Sometimes I think we all need a reminder.

It was a great lunch.

Happy Monday. :)

 

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