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Archive | March, 2013

New Abortion Law in North Dakota re: Disabilities Not About Disabilities At All

I don’t usually blog on the weekends, but a friend brought something to my attention today that’s really annoying me. A new new abortion law in North Dakotaabortion law in North Dakota’s is the first to prohibit abortion on the basis of the fetus having a genetic “abnormality” (Disability Scoop‘s word, not mine) detected prenatally or the potential for a genetic abnormality. It’s one of three new abortion laws passed  in North Dakota this week that make up the tightest control in America yet over the circumstances under which a woman can have an abortion.

And it’s hypocritical nonsense.

“Tell Us What You *Really* Think About the New Abortion Law in North Dakota, Sarah…”

I realize that, to regular readers, this may seem like a very odd stance for me to take on a law that would prohibit abortion on the basis of even the potential of disability. One of this blog’s most accessed posts is the one that I wrote on how wrong I thought it was that women who are carrying a fetus with Down’s Syndrome often experience pressure from doctors to abort it.

The idea that presence of a disability or the potential for disability is sometimes the deciding factor in whether a woman carries a fetus to term makes me very, very sad. I think that it speaks volumes about not only general attitudes toward disability, but also to a fear that the resources to adequately care for a disabled child simply aren’t available (which could be part of the reason why it’s difficult to find adoptive homes for the disabled children who end up in the child welfare system).

I’ve seen how little social support is available, and how the little that is available keeps decreasing as the years pass.  I can understand a fear of not being able to cope with the parenting challenges, especially in families already facing challenges such as poverty.

I do try to (usually) understand even decisions that make me very sad.

And I keep always coming back to my belief that a woman has the right to choose what she wants to with their own body.

So I don’t feel like I can judge any women for deciding to abort a fetus with a disability or the potential to develop a disability, as sad as the decision might make me.

But I Judge the Hell out of the Lawmakers that Put this New Abortion Law in North Dakota in Place

Yes, I do. Because I think they’re being disingenuous. I truly believe that this new abortion law in North Dakota is merely another effort to control access to abortion, and that they’re using the restriction on fetuses with disabilities or the potential to develop disabilities because it’s a convenient way to do so. And just as disabled people aren’t here to be society’s “inspiration”, they’re not here to be pawns either.

I submit that the lawmakers that put this new abortion law in North Dakota together that if they  were truly concerned about lowering the number of fetuses that are disabled or that may become disabled because of a congenital condition, they’d concentrate on making these social reforms rather than making an abortion law about fetuses with disabilities:

  • Make adequate funding for respite, personal development, special diet and equipment, early intervention programs, and a case coordination worker available to families of disabled children from the toddler years until adult services kick in.
  • Recognize that because of expenses associated with raising a disabled child, a family that might be “well off” otherwise may need to rely on safety net services such as food stamps and Medicare.
  • Develop ways for parents and caregivers to connect and support each other, to further their education about caregiving issues, and to quickly access appropriate supports in a crisis.
  • Ensure that schools are properly following the IPRC process for disabled students, including the piece about transition planning for when a student moves from elementary to junior high, junior high to high school, and high school to post-secondary school or the job market.
  • Explore options for community-based residential placements (and not just group homes). Give disabled people a fighting chance to be community members. Develop ways to monitor the safety of of these placements on a regular basis and to provide a timely and thorough response to reports of violations.
  • Work to identify and eliminate ablism within government systems and start discussing how government can help the private sector with the same process.
  • Start acknowledging that the unemployment rate for disabled people in the US is much higher than for non-disabled people, and plan how to address it.

If I saw even one of those those things moved up on the priority list along with this new abortion law in North Dakota, I might believe that this is really about protecting the lives of disabled people.

But I really don’t think this new abortion law in North Dakota has to do with disabilities at all, so I’m not going to hold my breath.

Are you?

More about the new abortion law in North Dakota: http://www.disabilityscoop.com/2013/03/27/in-first-abortions-disabilities/17593/

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Arianna Hill and her “Broken” Cheeseburger – Good for Chili’s!

I like stories to which I can relate. And when I read this story, about which many of you may have already heard, about autistic 7-

Arianna Hill

Arianna Hill kissing her “fixed” burger. Photo by Anna MacLean

year-old Arianna Hill in Midvale, Utah’s Chili’s restaurant who was brought the “broken” cheeseburger, I found myself nodding. I also found myself thinking, yet again, about how many issues arise in life (and not just in interactions with disabled people) because we make assumptions (myself included…I can’t tell you how many times I said to people I supported, particularly in the early stages of my career, “I made an assumption and I apologize. I’ll do my best not to do it again.”).

Arianna Hill’s whose sister, Anna MacLean, took her to Chili’s last weekend before going to see the Easter Bunny. Arianna Hill ordered a hamburger which server Lauren Wells cut in half. Chili’s does this with children’s burgers to make them easier for the children to eat and to see that the burger is cooked to the right temperature. However, when Arianna Hill received her burger, she declared it “broken”.

Seeing that this seemed to have put a damper on Arianna Hill’s earlier high spirits, Wells ordered another another burger for the girl free of charge. Manager Brad Cattermole apologized personally to her, brought her some free fries to enjoy with her burger, and all was well.

MacLean was very impressed, saying that Arianna Hill “has to have certain things in a particular order at all times. One slight change in her routine can change the course of the day instantly,” and that she “did NOT expect such kind and compassionate mannerisms from Lauren and Bradley” given what she’s heard that other autistic families and their children have experienced in restaurants. http://www.huffingtonpost.com/2013/03/26/waitress-fixes-broken-cheeseburger-video_n_2957019.html

“No Butter, Please”

How can I relate to this? Besides knowing what’s like to have to say, “I made an assumption and I’m sorry,” I’ve sent back food in restaurants because of assumptions. Not often, by any means – I’m part of a family that loves food and that isn’t all that picky. There are very few things for which I’ll send back food in a restaurant, or not eat it if I’ve ordered it. I’ll definitely send it back if it’s undercooked (especially meat; I’ve had food poisoning and I don’t want it again, thanks).

But I will send back sandwiches that have come with butter or margarine on them.  I don’t like butter or margarine on bread at all, and I really just don’t like putting myself in positions where I even have to try to choke it down, Something about the texture makes it just…yucky. Most times I remember to tell servers, “No butter, please,” but I occasionally forget. Most restaurants are very accommodating and will make me a new sandwich (and more and more avoid the issue altogether by just not putting butter or margarine on sandwiches anymore) They seem to see that it’s an assumption that everyone likes butter or margarine on their sandwiches, the same way that Wells and Cattermole realized that they’d made an assumption that all children want their burgers cut in half.

Arianna Hill – Good Job, Chili’s

What I really like about this story is that Arianna Hill and her sister weren’t judged because her request was unconventional. It would be easy enough for Wells and Cattermole to say to the family, “What’s the difference? Why does her burger have to be in one piece instead of cut up?”. But they didn’t. They saw that a customer was unhappy and they took (what turned to out be very easy) steps to rectify the situation. And that’s what the bulk of accommodating disabled customers come down to – not hugely expensive changes to a physical building (although these are important), but small actions every day on behalf of all employees.

Including adoption of a policy where staff ask rather than assume:

  • Ask the customer if they found everything that they wanted, rather than assume. He might have some disability that prevented him from reading signs, reaching items on high shelves, hearing store announcements, etcetera, that made it difficult to get everything that he came in for. 
  • Ask someone who looks a little lost, “Can I help you find something?” She might be feeling overwhelmed by all the sensory information in the store.
  • In Arianna Hill’s case asking, “Would you like your burger cut in half?” would have been a good way to “ask, not assume.”  But good for Chili’s for handling it the way they did.

Disabled people spend money at stores and restaurants too, and we talk about the places that are particularly aware or especially unaware of our needs. It’s worth it, in my opinion, for especially large corporations to insist that their staff training includes disability sensitivity training.  Because all people in the restaurant business business, in the ideal world, should have handled the situation with Arianna Hill and her “broken” cheeseburger as well as Lauren Wells and Brad Cattermole of the Chili’s in Midvale, Utah did.

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Power of Attorney – Power over Everything?

I was reminded the other day of a conversation with a colleague about our responsibility to people to intellectually disabled people power of attorneyto…keep them safe from themselves, if you will. It got me thinking about Power of Attorney and trusteeships.

The conversation had had come about because we were both talking about how many people we’d supported in our careers who smoked, and our concerns that it was difficult to make them understand what a health concern it was and what a drain on finances it could be. She made the point that if people intellectually disabled people who really didn’t have a conception of money and budgeting were allowed to buy as many cigarettes as they wanted, they could easily spend all of their money for the month – rent money, food money, bill money – on cigarettes and find themselves out on the street.

As heartless as this might make me sound (I really don’t want to see people on the street), I’m torn about this. I think that there’s reasonable safeguards for intellectually disabled people (and that includes Power of Attorney, when used properly and respectfully) – and then there’s “getting all up on their business”, as the saying goes. And sometimes that I think that  it’s a very fine line.

What is the Power of Attorney Role?

I do see the desirability behind some measures such as a Power of Attorney for Personal Property, and trusteeship for income support payments for people that have difficulty managing their money – as long as there’s an agreement that the person’s choice about how to use money beyond the minimum required to keep their rent and bills paid is theirs.

However, if I happen to be someone’s trustee for Ontario Disability Income Support Payments (remember, the person has to agree to this) and they want to use the $150 left after monthly bills are paid for cigarettes that they smoke in one day, is it really my place to say no? Is it really even my business to know what they’ve spent the money on, if it’s agreed that this is spending money? I don’t think so. It’d be difficult to watch them go without spending money for the rest of the month – but, hey, tough lesson. I think we’ve all learned a lesson like this at some point, haven’t we?

Same with the Power of Attorney for Personal Health. I understand why it’s necessary. I’ve seen cases where I’ve certainly wished it was easier to get. But I’m ultimately glad that it’s not, and I think that Power of Attorney needs to be enforced over an individual’s personal decision about his or her health only after a great deal of consideration. Many, many people that we consider “of sound mind” and “normal intellect” make decisions about their health without understanding (or totally disregarding) all of the relevant information, and to say “You can’t make the decision because of your intellectual disability” would be unfair.

Not that I think that support agencies for intellectually disabled people are absolved of responsibility to ensure that the people they support about healthy choices or to do their utmost to make sure that when there’s a medical decision to be made that individuals understand all their options to the best extent possible. But this is the place of good, quality, continuing health care by a team including, at a minimum, a doctor and a dentist, and by specialists that take their time and make sure that information about health decisions is expressed in the way that the individual best understands. The medical community needs to find ways effective ways to connect with people with all manner of disabilities about potential issues affecting their health, to make them aware of risk factors and to provide needed information, and to find ways to work with the individual and (when necessary and appropriate, and when the individual desires it) family and other support systems to mitigate risk behaviours.

But sometimes people don’t want to change risky financial or health behaviour. And it’s not the job of the Power of Attorney or a trustee for income support to protect at all costs.

Does This Make Life Messy?

Yes.

It’d be so much easier to just make “good” decisions for people. I know that there are times in my career when watching someone that I support make a bad decision about their finances or their health has been heart-wrenching. I can’t even imagine what it must have been like for the families. I understand why families of intellectually disabled people get Power of Attorney. I understand why trusteeships get put in place.

Messy, yes. A million times yes.

But, unfortunately, we’re still all learning about putting equal rights in place for all people as we go along. It’s going to be messy for a while.

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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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Alexis Wineman and Sonia Sotomayor…Where My Thoughts go While Watching TV…

I try to catch “The Jeff Probst Show” when I can, or at least have it on in the background as I do other things. I like his style. I think that Alexis Winemanhe tackles interesting issues (including a number of disability issues in this season, his first on the air as a talk show host) and interviews fascinating people – including Judith “Judge Judy” Scheindlin and the cast of “Push Girls”. He didn’t disappoint on Wednesday when he interviewed Alexis Wineman, this year’s Miss Montana and the first Miss America pageant contestant with autism (her terminology choice, as she and Jeff Probst discussed).

I didn’t watch the Miss America pageant, and I’d never heard Alexis Wineman interviewed before. She seems like a lovely young woman – articulate, intelligent, and certainly a wonderful spokesperson for autism awareness. However, listening to her speak reminded me of questions that arose for me when I saw Supreme Court Justice Sonya Sotomayor interviewed a few months ago. I remember thinking then, “I wonder if she ever gets tired of being interviewed as Supreme Justice Sotomayor, female Justice/first Hispanic Justice/first female and Hispanic Justice and not just someone who was obviously accomplished enough to get appointed to the Supreme Court.” Will Alexis Wineman ever get tired of the media seeing her as The Beauty Queen with Autism (as opposed to a beauty queen, like the other competitors?)

Alexis Wineman, Sonia Sotomayor, and Being Thrust into the Advocate Spotlight

I understand the temptation to focus on the fact that Alexis Wineman has autism. She’s achieved something significant, something that gives her some social status, and like we did with Oscar Pistorius, it’s almost impossible not to hold Alexis Wineman up as a role model chair_sonia_sotomayor1  for other disabled people. She represents the idea that it’s possible for disabled people to make their dreams come true. That’s very powerful.

But I don’t think that it’s any lack of determination or will to succeed that keeps most disabled people from attaining their dreams. It’s the social barriers. William Peace wrote about this quite eloquently when he wrote about Oscar Pistorius right after his arrest. http://badcripple.blogspot.ca/2013/02/more-on-oscar-pistorius-by-andrea.html

And I think that one of the drawbacks of being a disabled person (or a person from any oppressed group in society) who has found a way to break through those barriers is that you become an advocate whether you like it or not. I wrote about this here: http://www.girlwiththecane.com/token/.

If Alexis Wineman or Sonia Sotomayor want to be advocates, more power to them…but I don’t think that they should feel like they *have* to be, just because they’re the “first” to do something.

I feel like our focus is misplaced a bit.

The Least Dangerous Assumption

I did a transcript for Ollibean this week of an interview that they did with filmmaker Ray Ellis. He’s done the award-winning documentary “Certain Proof: A Question of Worth”, which follows three children with communication disabilities through the school system for two-and-a-half years. He and the interviewer, Lauri Hunt, had a very interesting discussion about assuming competence (not just in disabled people, but in everybody) is “the least dangerous assumption”.

If we truly assume competence, then it shouldn’t surprise us that a young woman with autism like Alexis Wineman made it so far in the pageant world. We shouldn’t be making such a big deal as a society that Sonya Sotomayer, a female Hispanic, was appointed to the Supreme Court. While they should certainly be celebrating their achievements, the media story should be that the powers-that-be in their particular fields realized what most of us have known for a long time:

A woman can have autism and still be beauty queen material.

A Hispanic woman can be Supreme Court Justice material.

Not only realized it, but removed barriers to full participation in society to groups that traditionally ran into into them full force…or at least a member from each of these groups, anyway.

It’s a start.

I feel grateful that, even in the very small town in which I work, no one who’s employed me has ever said, “We’d like to welcome Sarah, the first stroke survivor we’ve ever hired!”

How would it make you feel to have your achievement qualified by your membership in an oppressed group?

Learn more about the film “Certain Proof: A Question of Worth” at http://www.certainproof.com/

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Sequester, Sequestration…Whatever You Want to Call it, It’s Bad News

It’s been an exciting week! We are just over a week into Developmental Disabilities Awareness Month. We had “Spread the Word to Endsequester the Word” Day on Wednesday, to spread awareness about how hurtful the words “retard” and “retarded” can be and to encourage people to sign a pledge to eliminate these words from their vocabulary. And today, March 8, is International Women’s Day – I’m going to be celebrating all the amazing women in my life, disabled and non-disabled, and American women can feel good that the contentious Violence Against Women Act was finally made law this week. But don’t go giving American Congress too big a pat on the back though, in this week of celebrating developmentally disabled women and their achievements and their right to living in safety. Because we’re also one week into the Sequester, and that’s nothing to celebrate.

Sorry. I Know You’re As Sick Of Hearing About the Sequester As I Am

I’m Canadian and CNN’s been out all week in my apartment and I’m *still* tired of hearing about the Sequester.

I’m tired of hearing about how the Sequester was designed to be so terrible that it was never supposed to happen…and yet it did.

I’m tired of hearing politicians from both parties blame the other party for letting the Sequester happen.

I’m especially tired of hearing of hearing how devastating its effects will be for military.

I’m tired of hearing almost nothing about how the cuts will affect education and social services, as if they’re unimportant.

So I did some research of my own on the Sequester.

The Sequester and Disabled People

I found these predictions about how the Sequester will affect disabled Americans:

See 12 – 22 in this article to read more about the Sequestor cuts to social services and education: http://abcnews.go.com/Politics/OTUS/57-terrible-consequences-sequester/story?id=18551994

Lip-Service

After Mitt Romney’s recent appearance on Fox News Sunday, where he stated that he’d lost the election because of his campaign’s failure to connect with minorities, I went back to the transcripts of the National Forum on Disability Issues in September. I’d wanted to point out that he’d missed an opportunity to connect with a sizable minority that day by not attending – and, after reading the transcript, remembered that both he and Obama had sent representatives (admittedly not as good as showing up, but there were other Members of Congress that actually did show up).

It’s frustrating to see that all the lofty ideals that came out the speeches at that conference, when it comes down to arguing about the money, basically meant nothing…for the same reason that it makes me angry when I hear Tammy Duckworth’s or Gabby Giffords political colleagues talk about them being “amazing” or “inspiring” (beyond my knee-jerk negative response to “disabled” and “inspiring” being used in the same sentence): Democrats don’t have a problem with using a disabled person to bolster their “We’re good people, look at us including disabled people” image…just don’t ask them to provide the supports to get them them there, apparently.

And the Republican party? That’s a blog for another day.

But Enough about the Sequester…In the Spirit of the Week…

1. Please go make the world a bit of a better place today and, if you haven’t already, head over to r-word.org and sign the pledge not to use “retard” or “retarded” anymore.

2. Look up some of these amazing people. They’ve got developmental disabilities and they’re taking the world by storm:

  • Dr. Janice Brunstrom
  • Marlee Matlin
  • Alexis Wineman
  • Chris Burke
  • John Cougar Mellancamp

3. Go hug a woman that’s important to you and tell her how glad you are that she’s in your life.

4. Watch for my articles on http://ollibean.com/. I’m a writer there now. 🙂

Have a great weekend!

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