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Michael Mullins Sings National Anthem at Fenway Park – Tough Questions

michael mullinsAll right, people, prepare yourselves. I’m feeling cranky, and I may sound a little cold-hearted in this post. I don’t mean to come across that way, and I do apologize if that’s the case…but, frankly, I’m okay with it. It’s just my viewpoint, and (as always), you’re welcome to take it for what it’s worth. But I read a news story the other day about Michael Mullins, a man with Down’s Syndrome who recently sang the American national anthem at a baseball game at Boston’s Fenway Park, and it rubbed me in all the wrong ways.

Not because I think it’s wrong that someone with Down Syndrome sang the national anthem at a professional baseball game. Why would it be? Particularly since Michael Mullins does have  a very nice voice. It’s been his dream for almost a decade, apparently, to sing the national anthem before a Red Sox Game at Fenway. He’s been actively campaigning with Fenway staff for the last four years for the chance to do it.

Here’s my issue: Plenty of people who since very nicely would also love the chance to sing the national anthem at a Fenway game, and wouldn’t get anywhere near the top of the list of the people being considered for that privilege, even after four decades of campaigning for it. I suspect that Michael Mullins got the chance more because he’s disabled than because of the quality of his voice.

Voice quality was probably a factor. Just not likely the deciding one.

That’s problematic to me.

Did Michael Mullins Agree to “Raise Awareness”?

The video of Michael Mullins singing was uploaded with the following caption:

This video literally captures a dream coming true as Mike raises awareness for adults with disabilities while showcasing his amazing singing ability. Please share this video to raise more awareness and promote an amazing dream coming true.

I’ve got dreams, too. I’d love work with Jon Stewart as a writer for “The Daily Show”. But not because me having that job raises stroke awareness, or because there’s a perception that because I’m disabled, that makes whatever writing gifts I do have especially amazing. Or because, as a disabled person, my life must be so difficult that I’m more deserving of a chance than other folks than having that dream come true. All things considered, even my post-stroke life’s been pretty cushy. If we’re going to start out “Your dream’s coming true” cards to people on the basis of how great the challenges are that they face in life, plenty of people (disabled and non-disabled) should be in line for one ahead of me.

I’d rather get the job on my own steam, thanks.

I know nothing about Michael Mullins. I imagine that his life’s been difficult in some ways…perhaps many ways. Maybe he’s been had some of those raw deals that make me wonder how people go on – I have no idea.  And maybe he agreed that singing at Fenway would be a great chance to raise awareness about disabilities, and didn’t mind that the opportunity came along with the obligation to be an “automatic activist“.  It’s possible. The media paints a story, however, of him just being happy to sing, not one of wanting to be an ambassador for the disabled community.

The Importance of Treating Michael Mullins Like an Adult

What really made me uncomfortable about this story was that it struck me as a “Make-A-Wish” story – a story of a child getting an opportunity that they wouldn’t normally, being to live out a dream, as respite from the harsh and ongoing realities associated with life-threatening illness. We know that these kids wouldn’t normally be selected for the opportunity in question, but it’s their dream, and the kids have been through a lot, and who’s going to begrudge a child the fulfillment of a dream when he or she may not make it adulthood and have a chance to make that dream come true on his or her own steam?   I understand (and have always supported) the Make-A-Wish foundation’s mission.

But Michael Mullins isn’t dying, and he’s an adult. As an intellectually disabled adult, there’s a high likelihood that he often gets treated like a child – we see flashes of that in the way that both Fenway and the media talked about him – but he’s an adult nonetheless. If this story wasn’t about a disabled person, I’d bet that the majority of comments on the articles that I looked at (for example, here and here) would be along the lines of, “What makes him/her so special?” instead of, “Fabulous job!” and “Had to skip through so I wouldn’t start crying at work.”

I did consider that Michael Mullins was singing the National Anthem for a game that had been designated to promote awareness for a disability or a disability agency, in which case it would make some sense that they’d choose a disabled person for the job. I used to attend the annual Community Living Blue Jays Game at the Roger’s Dome each year, and a disabled person sang the anthem. Fair enough. That makes sense to me. But that’s not the case here, as far as I can see.

And I can’t recall that the singer at those games was ever introduced as “inspirational”, or a list of their supports being rhymed off into their introduction:

And here to perform our national anthem is an inspirational young man. He is a member of the Michael Lisnow Respite Center, which provides emotional and physical support for people with disabilities and their families. Put your hands together for Michael Mullins.”

Regular readers know how I feel about the word “inspirational” and disabled people. And while there’s nothing wrong with attending a respite center (and the announcer may have been following a convention of putting the singer’s name at the end of the introduction), his disability had to be the focus, even before his name?  There was nothing else that they could have emphasized, like the fact that he’s been singing the national anthem at local community and sporting events in Hopkinton (where he lives) for years?

As for my gripe with the media, it was about a quote in this article, where Michael Mullins is describing his family’s reaction to the news that he’d be singing at Fenway.

My brother started crying,” he said. (Mullins wouldn’t admit to it, but the staff at the center said he was a little teary eyed as well.)

If Michael Mullins wouldn’t admit to it, he probably didn’t want people to know, reporter Jonathon Phelps. Was it really respectful, in this context, to print what the staff said about his reaction when he wouldn’t admit to it himself?

Like I said, we need to treat to Michael Mullins like the adult that he is.

Michael Mullins – Things to Consider

For the record, I don’t blame Michael Mullins one bit for taking this opportunity when it was offered to him. This was his dream. As far as he was concerned, he and staff at the respite house had been working toward it for years – talking to Fenway, organizing the Facebook petition, practicing. And I don’t for a moment think that the staff or Michael Mullins’ family meant any harm – they were simply trying to make a dream come true for a young man.

But I think that the staff in particular needs to ask themselves what he’s taken from this experience, and what the community’s taken from it.

Did it advance the causes of equality and community inclusion?

Or did it “other” a disabled man (and potentially disabled people generally, by extension) even more so than he already was?

I know what I’d say. But, as I said, I’m feeling cranky.

All that being said, however – Michael did give a lovely performance, and you should check it out:


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Happy Thanksgiving?

I wanted to write a post about how one of the things that I’m grateful for thisthanksgiving Thanksgiving is how far people with disabilities have come. But I didn’t quite get there.

Happy Thanksgiving…*sigh*

I was going to start my Thanksgiving post off with this:

“On Thanksgiving Sunday, my father and I watched “The King’s Speech” together. My father told me that King George VI had a younger brother, John, who was basically kept in isolation from not only the public, but from the family’s day-to-day life because of epilepsy and perhaps autism.  His mother visited him often, and he had a cottage and a full staff of his own, but he was kept out of the public eye and court life because he was “different”. Segregating a child from the public eye that way seems as alien an approach to dealing with disability to me as shutting a child with a disability in an institution and forgetting that they exist…or, as a health care professional, suggesting to parents that it’s in everyone’s best interest to do that.”

I wanted to suggest, in my Happy Thanksgiving post,  that we’ve come oh-so-far since then, with so much success in closing institutions and people with disabilities being treated so much better by the medical community. But then I remembered the posts that I’ve written about discrimination in granting organ transplants, the attitude that some of the medical establishment holds that babies with Down’s Syndrome should be aborted or denied life-saving treatment after birth, and the recent story out of England about the man with an intellectual disability who found a DNR that he’d not consented to in his suitcase when he returned home from a hospital. I remembered the conversations that I’ve had with colleagues about how group homes are really just little institutions, where abuse can happen just as easily as it did in the larger ones that people fought so hard to close.

I remembered that for several years after my stroke, there wasn’t a truly accessible restaurant in my town, and that legislation mandating that government buildings become accessible in my province was enacted only in 2005. Right now, an overhaul of the main street in my town has the sidewalks torn up on both sides, making passage practically impossible for anyone using a manual wheelchair and difficult for anyone with any sort of mobility or balance disability. No one thought of this, apparently, or cared enough in their hurry to get the job done to consider that they should only tear up one side of the street at the time.

I remembered that Henry Miles Frost has been petitioning since before school started to go to the school that’s just down the street from him instead of a special school somewhere else. Despite all of the people that stand with Henry, the school board won’t be convinced.

I remembered Britain, and how people with disabilities have been struggling there the past year as their benefits have been slashed.

What do you do when it’s difficult to remember the positives?

Happy Thanksgiving. Sorry I’m late…

By the way, Prince John died when he was 13. This blog post talks about his story in more detail:


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Newfoundland Youth with Disability Beaten by Group of Teens – How Bill Johnston Misses the Point

Today we have a story from Canada…Newfoundland, specifically, which is the province in which I was born (I don’t remember much Bill Johnston about it, as I was pretty young when we moved). But that’s another story. This story is about an assault of a person with disabilities that went on last week-end, and I’d like to thank Paige Fougere and Patti Sampson of Easter Seals Camp Tidnish in Nova Scotia for bringing it to my attention.

The reports involve a 24-year-old man in the town of Mount Pearl (see the map of the St. John’s area to the right), with undisclosed physical disabilities. One article had some comments from people who claimed to know the young man, saying that he has cognitive disabilities as well, but I found no media confirmation that he has cognitive disabilities. The young man was in a mall, going to see a movie, when he was lured outside, off into a wooded area. 3 boys and 2 girls, all between the ages of 14 and 17 assaulted him, robbed him and left him. The young man managed to walk to a convenience store after the attack, where a woman who is being called “the Good Samaritan” and the store employees called the police and the hospital.  The young man has been released from the hospital, and the 5 teenagers have been charged. There didn’t appear to be any personal connection between the young man and the teens, but the attack did appear to be planned.

I am very, very glad that the young man’s injuries weren’t serious, and that the attackers were apprehended quickly. The whole thing brings to mind other stories of people from “undesirable” groups being lured to an attack where the outcome was much worse, such as Matthew Shepard.

However, after reading the articles about this story, and particularly after watching the press conference that Royal Newfoundland Constabulary chief Bill Johnston held on Monday, I am disturbed. I am disturbed.

“Powerless”, says Bill Johnston

I am disturbed that Bill Johnston said that the young man, as a person with physical disabilities. was “really powerless”. This isn’t true, Bill Johnston,  and it’s a terrible message to put out to the public.

Yes, once he was out in the forest and facing five attackers, the young man had no control over the situation. I submit that very few people facing five attackers have much control or personal power in a situation where they face five attackers, whether they have disabilities or not. But (and this should in no way be taken to imply that I’m blaming the young man for what happened, because he is not responsible for the actions of these youth), he had a choice of whether or not not he was going to follow these youth into the forest. And if he didn’t recognize that there was potential danger inherent in that situation, in this day and age, then someone failed him in basic safety education that’s owed to everyone in general and to people with disabilities in particular. It’s a harsh fact of life that people with with disabilities are targets for this sort of thing, and they need to be educated about how to keep themselves safe. So if people in this man’s life want to call him powerless, they need to look at how they potentially contributed to that.

Also, a powerless man wouldn’t have had the presence of mind and the strength of will to pick himself up after a violent assault and get himself to safety. Give this man some credit, Bill Johnston.

Bill Johnston Thanks the World

I’m also disturbed that Bill Johnston appears to believe that everyone involved in helping out with this case needs to be strongly praised for their stepping in and thanked repeatedly – as if they went way above the call of civic (and in the police’s case, professional) duty by taking the time to help a person with disabilities in distress.

Over the course of the ten minute press conference, Bill Johnston makes it a point to thank the “Good Samaritan” and the people in the store four times for stepping in and helping the young man. He points out twice that it took the police less than 48 hours to get the teens into custody, and thanks them three times for the hard work that they put into resolving the case quickly and bringing peace to the family.

News flash – helping a person with disabilities who wanders into a store and a appears to be bleeding from a beating doesn’t make someone a hero. It makes them someone who does the right thing when someone who’s bleeding from the head wanders into a store and appears to be bleeding from a beating. The police should be working hard to quickly apprehend the people responsible for hurting that person because that’s their job, not because the person has disabilities.

Personally, I can’t imagine anything that’d make me feel worse had I gone through this than being subjected to the idea, from the chief of police, that I should feel especially grateful for receiving the help that I did, given that I’m a person with disabilities.


Not that these “appalling” (Bill Johnston said it, and don’t get me wrong, I agree…but but but…) sorts of crimes don’t need prompt attention, or that it’s not a good thing that people in towns watch out for people with disabilities. I know that people with intellectual disabilities that I’ve supported in my small town have people watching out for them, and I appreciate that. But 5 teens ganging up to beat, rob, and leave someone bleeding in the woods is an appalling crime that merits quick action on the police’s part no matter who it happens to. I’d like to think that Bill Johnston feels the same way.

Shouldn’t we be just be looking out for each other in general?  Is that such an outdated notion?

This is a story that, for once, I’m sorry has been made out to be totally about disability. I think it misses the point.

What do you think?

Bill Johnston talking to the press:

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Nissan NV2000 Voted in as NYC’s “Taxi of Tomorrow”

taxi of tomorrowWell, it’s official. New York City’s “Taxi of Tomorrow” is the Nissan NV-2000 taxi.

Not that we didn’t know it was going to be. If you’ve been following this story (or listening to me crab about this for the past year or so), you’ll know that the decision was made quite some time ago. But on September 20th the NYC Taxi and Limousine Commission officially voted in the Nissan vehicle as the “Taxi of Tomorrow”.

It’s a baffling move. One of the other three competitors in the “Taxi of Tomorrow” competition, the Karsan V1, is fully accessible and ADA-approved. Heck, the fully accessible MV-1, manufactured by Vehicle Production group, while not a competitor for “Taxi of Tomorrow”, has been on the road in New York for months. Both are side-entry, which is safer for passengers in wheelchairs, and have ample room for other passengers when transporting a passenger in a wheelchair.

Contrast with the NV-2000:

  • A conversion van. It needs to be chopped up and reassembled, at considerable extra cost, to be made wheelchair accessible.
  • Rear-entry
  • Has room for only one other person in the passenger area when transporting a passenger in a wheelchair.

Need more convincing? The NV-2000:

  • Wasn’t tested on New York streets before being declared the “Taxi of Tomorrow”
  • Is assembled in Mexico, taking jobs out of the US
  • Has poorer gas mileage than the 6000 hybrid cabs currently operating in NYC that it will replace, as it runs on a combustion engine

What is Michael Bloomberg thinking?

People Who Use Wheelchairs Not a Factor in “Taxi of Tomorrow” Decision

Obviously he’s not thinking about the people in his city with disabilities. He’s made that very clear, by his steadfast refusal to make more than 2% of New York’s cabs accessible until he was required to by the ruling of Supreme Court Justice George Daniels, and by his assistance on appealing that ruling.  His ignorance about the realities of living with a disability, reflected in statements such as “It’s always somebody who says, ‘oh, no, everything has to be handicapped accessible or wheelchair accessible,’ but that’s not necessarily when the people who are in wheelchairs need” is astounding.  It’s difficult to imagine why he thinks that people who use wheelchairs would be satisfied with using the ailing Access-a-Ride program, with its long wait times and frequent no-shows, to plan their travel needs, as opposed to being able to hail a cab on the street like people who can walk. Mayor Bloomberg is conveniently ignoring the fact that the cab fleet in London, England, has been totally accessible for over 20 years.

It’s also difficult to imagine why a mayor who claimed, just in his radio broadcast from this past weekend, that job creation is a priority for his administration, would fail to consider that he could potentially get more people who use wheelchairs into jobs if he gave them access to reliable transportation. I wonder if he’s considered the other benefits for the city that come from giving people who use wheelchairs more transportation options: more community involvement and more opportunities to contribute to the city’s economy, from both residents and visitors.

Not to mention, if he’d gone with the V1 as “Taxi of Tomorrow”, Karsan was willing to manufacture it in Brooklyn. Not out of the country.

But I’ve said all this before.

I think that the bottom line is that Michael Bloomberg knows very little about the lives of people with disabilities and doesn’t really care to learn. He’s dismissed that part of his voter base and the people that compose it – their needs, their dreams of being treated as equal to their non-disabled peers, their very civil rights – since the beginning of all this.

But then, Nissan did create a new shade of yellow especially for the “Taxi of Tomorrow”. Maybe I just need to get my priorities straight.

More on this story:




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250th Post! My AVM Story: Wishes and Choices

So, this is my 250th post! Do bloggers generally celebrate 250 posts? It seems worthy of celebration to me.wishes and dreams

And it seems like a long time since I’ve posted about anything positive. So I’m going to post an essay that I wrote, in 2006: “Wishes and Choices”. It’s about how I was feeling about my recovery process at the time.

“Wishes and Choices” is still true…mostly. I’m a less little naive now. I no longer believe that everything happens for a reason, but, to quote Tom Lehrer: “Life is like a sewer: What you get out of it depends on what you put into it.” I’m much more accutely aware now, however (not only because of my experiences but because of many, many discussions with others much smarter than I, not to mention hours and hours of having CNN on in the background in my apartment) that “stuck” isn’t always a state of mind, that “staying positive” isn’t as easy as everyone makes it sound, and that sometimes even working your hardest just isn’t enough…particularly for groups existing in a social system that’s stacked against them in multiple ways.

I’ve grown up a bit since I wrote “Wishes and Choices”. I hope I’m a bit wiser…and that my writing has improved at least a little bit!!

But my main impetus for writing “Wishes and Choices”. hasn’t changed. As hard as it’s been to get here since the stroke, I wouldn’t change what happened. It got me here, to my 250th post, didn’t it?

And I like being here. :) Thank you all for being here with me.

(Oh, if I ever reprint “Wishes and Choices” anywhere else, I’ll find some way to say what I want to say without using “inner voice”.  A promise to an editor friend.)

Wishes and Choices

I’ve always believed that things happen for a reason. Even “bad” things.

So, one day at Penetanguishene Rehabilitation Hospital, I declared to the social worker that if I had to do everything over again, I wouldn’t change a thing. I’d have the surgery, definitely. I’d have the stroke. Definitely.

Well, that’s more written on stone on some days than others.

Some days I can’t help thinking that it would be nice to have three wishes to put towards restoring my health. Or even one wish.

I’d have to phrase my one wish very carefully.

Should I wish to be healthy again? All things considered, I am fairly healthy. The arteriovenous malformation is no longer a problem. My seizures are more a nuisance than a health risk. Despite my weak left side, I’m actually more physically fit than I was before the stroke.

Should I wish not to have a weak left side? That still leaves me with a seizure disorder, which makes me unable to drive.  Losing that freedom has affected me, in many ways, more than the weak side. Not being able to drive is a huge hassle, especially living in a rural area.

Should I wish that I hadn’t had the surgery? That would leave me with an AVM in my head, making me a ticking time bomb. I would have almost certainly had at least one other bleed, possibly causing the same neurological damage as the post-surgery stroke did.

I should maybe wish that there had been no complications after the surgery. That would be the wish, I think…no stroke to cause a weak left side, no scar tissue to cause the seizure disorder. Brain surgery seems scary, but is more routine than people think. When it goes well (which is most of the time) people aren’t even in the hospital all that long. With a routine surgery, I could have gone home in a week or so, recovered for another three, possibly been back to work by July. Life would have gone on.


Would I have met some of the strongest, gentlest, funniest, most loving, resilient, intelligent, determined and courageous people I could ever imagine?

Would I have the immense respect that I now do I for nurses (and the medical system in general), co-existing with the knowledge that sometimes I must speak with a firm voice and gently insist that I be listened to if I’m to receive the best that it has to offer?

Would I know how fun it is to run over bubble wrap in a wheelchair, or that you can tow at least two manual wheelchairs (with people in them) behind an electric one?

Would I appreciate how hard life can be for people with disabilities to live in a society in which it can be very difficult to manuouevre, both physically and emotionally?

Would I know in my bones that more people care about me than I can count, and finally be able to see how immersed in love I really am?

“Stay positive.” “Work hard for what you want.” “It’s what’s inside that counts.” Would these cliches have become part of my life philosophy?

Would I know how and when to ask for help, and feel comfortable doing so?

Would I know that just because life turns out differently than you expected doesn’t mean that it’s necessarily going to be worse?

Perhaps I would have learned all these things somehow if I hadn’t have had the stroke. Perhaps these were lessons I needed to learn, and acquiring a weak left side was just one way of getting there. Perhaps if the surgery had gone absolutely according to plan, I’d still be right here at age 29, writing a touchy-feely and somewhat vague reflection on how one wish could change my life.

Since I’ll never know whether different life circumstances would have taught me what I know now, brought me to this place where I am…perhaps I’ll just leave it at this:

I don’t need a wish. I have too many choices to fill my head with wishes.

I choose to hope.

I choose to find new ways of looking at the world.

I choose to be open to the connectedness between us all, to heal and be healed.

I choose to passionately pursue the things that give my life meaning.

I choose to celebrate the victories.

I choose to relax into my failings, and to try again.

I choose to stop, rest, and listen patiently and compassionately to my inner voice.

I choose to stop trying to control everything.

I choose to believe that “stuck” is just a state of mind.

I choose to not to let people handicap me.

I choose to let myself feel what I need to, when I need to feel it, and to ask for help when things get too hard.

I choose to let my mind and spirit run fast and free.

I believe…and I insist…that I don’t need a fully functional body to do any of these things.

I don’t wish. I choose.

Have a great weekend. You’re all awesome. :)

(Oh!  I’ve got a new web presence…check me out here:

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Update on NFDI2012 (National Forum on Disability Issues)

For a summary of what’s been going on with NFDI2012, see or my post on the conference: NFDI2012

Presidential Candidates Sending Representatives to NFDI2012

As of yesterday, both Barack Obama and Mitt Romney confirmed that they will be sending representatives to NFDI2012 to present their respective campaign’s position on Americans with disabilities. Edward M. “Ted” Kennedy, Jr. will represent Barack Obama, and Rep. Cathy McMorris Rodgers will represent Mitt Romney.  Senate candidate Sharrod Brown (Ohio) will also send Rep. Nancy Garland as his representative. Republican Senate nominee Josh Mandel (Ohio) has not confirmed whether he will attend or send anyone in his place.

Former CNN White House correspondent, anchor and Washington bureau chief Frank Sesno will moderate.

Press Release:

All seats are filled for the event, being held at the Hyatt Regency in Columbus, Ohio on September 28. You can still “attend” NFDI2012 via webcast, however. Visit the website to sign up.

If you have concerns about disability issues, you need to hear what the candidates have to say in order to make an informed decision when you vote. Listening to these representatives is likely the closest you’re going to get, given the fact that disability issues were given only a passing nod in Clinton’s speech at the Democratic National Convention, and not mentioned at all during the Republican National Convention. Please take advantage of this opportunity.

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Report Finds that Ontario Health Care Professionals Discriminate Against People with Mental Conditions

With all my Amercian election fervor recently, new readers might wonder wonder why I don’t write about my home country Ontario health care professionals(and the country in which I live), Canada, more often. It’s really because (and this is a failing on my part that I’m trying to correct) I don’t listen to a lot of Canadian news. I read the newspapers when I’m out for coffee, but that’s not every day.  But please don’t think it’s because I’m so patriotic that I won’t call my own country on nonsense when I see see it, because I’m not. Nonsense a-plenty is happening here in the North, as the Toronto Star’s  recent article about discrimination by Ontario  health care professionals against people with mental conditions aptly proves.
Let’s jump right into this one, shall we?

Ontario Health Care Professionals, Meet Me at Camera Three

Congratulations, Ontario health care professionals. You’ve really distinguished yourselves here. It takes a special breed of health care professional to say to someone, “Had I known you were crazy, I wouldn’t have operated on you,” or to leave someone with abdominal pain who actually needed urgent surgery go untreated for ten hours because they’re a recovering drug addict.
I’m not saying that every one of Ontario health care professionals would treat a “crazy” person like this…I’ve been the “crazy” person and been treated with respect and dignity by doctors and nurses…but to those Ontario health care professionals that would treat people with mental conditions in this way, shame on you. And shame on the medical facilities in which you operate, for allowing this sort of discrimination to go on.
I wonder how you all sleep at night.

Next Steps

All of this came to light in a report by Ontario’s Human Right’s Commission. Commissioner Barbara Hall has a number of ideas for stopping the discriminatory practices as revealed by the report. (See link above)

I’d be interested to hear how the attitudes of the Ontario health care professionals stack up to those of other medical professionals around the country. Something tells me that, like most discriminatory attitudes toward people with disabilities, this isn’t something that’s isolated to one geographic area, but something with roots deeply embedded in North American society at large (dare I say even Western society at large?)

And I think that’s what makes me feel saddest about the whole thing. That it’s just a small manifestation of a huge problem to which the solution seems simple (at least to me): Treat people with disabilities the same way that you’d treat people without disabilities. But that doesn’t seem at all simple to implement, either policy-wise or in peoples’ hearts and minds.

But I guess we all do what we can, right?

Have a great day. :)

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That’s Just Rude! I Don’t Have to Answer That!

My awesome blogger friend Lorna did a post on this video over at “Gin and Lemonade”: I had never seen the video before, and found myself nodding through most of it. People didn’t ask me these questions or make these remarks when I was in a wheelchair, but I wasn’t out in public very much when I was in my wheelchair. But I’ve hung out with enough people that use  wheelchairs that I’ve seen examples of most of what’s shown in the video.

People that comment on the video rightly point out that people with other sorts of disabilities get treated in these ways, too.  When I’m out in the community with the people with intellectual disabilities that I’ve supported, people do tend to ask me questions about the person instead of asking them.  I’ve seen that this tends to happen less in smaller communities, where people tend to know who everyone is to a greater degree (uncomfortably so, sometimes, and you know what I’m talking about if you’ve ever lived in a small town). But it does still happen.

I’ve gotten a lot of these questions and remarks because of my cane and my arm. I’ve had people assume that because I have physical disabilities, I have intellectual disabilities as well. Many people assume that I don’t work. I’ve been called inspirational, which really only bothers me because I’m not sure how to respond to it. I don’t feel inspirational. I don’t feel even particularly noteworthy most of the time. I just live my life dealing with what I have to deal with, the same way that everyone else does.

What Bothers Me

I watched the video a couple times, thinking that, yeah, ignorance about disabilities has definitely resulted in some extremely problematic patterns of talking to people (and around) with disabilities. I remember hearing at a funeral once, about the deceased, from a friend who didn’t know I could hear her : “It’s better this way. He wouldn’t have wanted to be a wheelchair for the rest of his life,” and it gutted me. “Like I could have been?” I thought, running from the room. “Does she believe that about me?”

No one knew whether I’d ever be able to walk again.

But what really struck me, watching this video, was the sex question. Besides thinking that if someone asked me “Can you have sex in that chair?” I’d say, “I usually get out of the chair,” I thought, “What a wildly inappropriate thing to ask a stranger, disabled or not!” Who expects someone who’s presumably an acquaintance at best to answer a question about their sex life?

Apparently society feels entitled to ask people who use wheelchairs that question, and feels entitled to answer. And I’m *really* curious as to where that attitude came from.

I watched the video again, evaluating the comments and questions through that filter of social appropriateness. And I’m starting to wonder if the problem isn’t just that people don’t know what to say to people with disabilities, or don’t have an appreciation of disability etiquette…it’s that people somehow have gotten the impression that it’s okay to treat people with disabilities rudely.

It wouldn’t be considered remotely polite to:

  • Ask an elderly male neighbour, “Can you still, uh, function like a young man, if you catch my drift?”  So why’s it okay to ask a man that uses a wheelchair about his sexual functioning?
  • Grill a woman in the grocery store wearing a scarf on her head about whether she has cancer, what kind, how long she’s had it, etc. So why are these invasive questions about a person with a disability’s medical history okay?
  • Stare, in general. Aren’t people brought up not to stare anymore? (Caveat: I’d rather have a little kid stare at me openly and then be given the opportunity to ask me questions than have an adult stare at me and try to hide the fact that they’re doing it.)

It’s interesting when you looks at the video in this way. There’s all kinds of rudeness – some of it very disability-specific, others of it just…rudeness in general (like the pick-up line that ended the video). And I think how you categorize each comment depends on who you are your personal history.  The “Jesus will heal you” thing, for example…I believe that this is ultimately rude too, yes. But more for the assumption that I want to be healed than for the imposition of someone’s religion on me. I can let the religion part roll off my back now. But that’s a very personal view, coming from years of work to come to terms with religion’s place in my life. Others may feel differently about it (as I did at one point in my life, when any perceived attempt to convert me would have made my blood boil).

Do you think that it’s become okay to treat people with disabilities rudely? What do you think has caused it?

Oh, and Canadians get asked, “My cousin/roommate’s brother/dog groomer’s son-in law lives in Canada…do you know him?”  all the time…%-)


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NFDI2012 – Tell the Candidates That You Want To Hear from Them!

Okay, I know that I said no more politics for a while. But this is important. And if you’re trying to make a decision about who ndfi2012to vote for in the upcoming US Election and you’ve got concerns about disability issues, this really is something that you should know about: The National Forum on Disability Issues (NFDI2012) is happening on September 28 in Columbus, Ohio, and the push is on get Obama and Romney to attend. Attend if you can, and get the candidates there!

The National Forum on Disability Issues – NFDI2012

I didn’t know that NFDI2012 was happening until the organizers approached me over Twitter last week.

From the website: “The National Forum on Disability Issues is an historic nonpartisan event. The 2012 event builds on the success of the first ever forum organized by the disability community in 2008. The forum will focus on the disability positions of the 2012 Presidential candidates. Candidates for the U.S. Senate seat from Ohio will also be invited to participate. The candidates will be given the opportunity to provide their positions on a wide variety of disability issues directly to the disability community.”

Personally, I think it’s a fabulous idea. Besides the little nod to people with disabilities in Clinton’s speech, there’s been no talk from either candidate about why the 57 000 000 people with disabilities in America should vote for either of them. I know that I have questions:

  • How do the candidates plan to get the people with disabilities that can and want to work, into the workforce?
  • How does the education of students with disabilities factor into Obama’s plans to strengthen the education system?
  • How will Romney make sure that people with disabilities who can’t work and can’t aare able to afford medical care if he overturns the Affordable Health Care Act?
I’m sure that you’ve all got great ones that you can add to the list.

Help Get the Candidates to NFDI2012!

Obama and Romney have been invited to NFDI2012, as have Ohio candidates for US Senate Josh Mandel and Sherrod Brown. None have committed yet to attending. Obama sent a representative in 2008, and Republican candidate John McCain participated via satellite.

NFDI2012 has provided letters on their website to send to each candidate telling them that you’d like them to be there, and as well as other social media contact media information for them, at

I follow @nfdi and frequently retweet their awareness tweets about NFDI2012, which often also go to the candidates as well.

Why Do I Care About This?

Why do I care so much, given that I’m Canadian? Because people with disabilities in Britain are dying right now because of the catastrophic cuts that their current government has made…because I’ve seen what happens in Ontario when governments drastically cut supports (any Ontario readers remember Mike Harris and his Common Sense Revolution?)…because I fear that more cuts are coming, sooner than we’re prepared for…and because I hear rhetoric from America right now that makes me think that if Americans with disabilities (and those who love them, support them, and advocate for them) don’t demand some answers from candidates while they have the chance, they’re not going to be able to make a truly informed decision on Voting Day.

As much as possible, you need to know what might be coming down the tubes when you vote for either candidate.

We don’t have an opportunity like this in Canada when federal elections come around. I don’t believe that Britain does either. Be at  NFDI2012 – September 28th in Columbus, Ohio (you can “be there” via webcast, too – I’m signed up to do so), and let your candidates know that you want them to be there, too.

More information:

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I Stand With Henry

I’m back to the blog this weekend to talk about a self-advocate that I found out about this week, and to ask you to take five I stand with Henryminutes out of your schedule to let him know, “I stand with Henry!”

Self-Advocacy Rocks

I used to work with teens with intellectual disabilities. Some of them weren’t even aware when they started with my agency that they had any rights. A few from that same group left my program see me on the street now and are excited to tell me about the latest way in which they stood up for their rights.

It’s an amazing privilege, to work with someone on becoming a good self-advocate…to examine with them what that means, and to see it start to sink in. Seeing the person start to apply the skills in their lives – well, that’s a real “this is why I do this work” moment.

It takes courage to stand up for your rights, and practice – it’s a skill. I was always proud of the teens I worked with for trying, no matter how it turned it. I’ve had to do it myself as a person with disabilities, and it can be pretty daunting, even when you’re got support around you. I’m sure that I don’t have to tell many of you this.

Keeping all this is mind, you can understand why I stand with Henry, and why I think you should too.

I Stand With Henry…Do You?

Henry has the makings of an amazing disability self-advocate. A young man with autism, he’s non-verbal and uses a communication device. He wants you to know something:

Personally, I don’t see why he can’t go to his neighbourhood school. I stand with Henry.

If you do too, please show your support by leaving a comment on his video at YouTube, or on the blog that he wrote:

There’s also a Facebook page:

It takes a lot to put yourself out there like this. Let’s let Henry know that there are people who have heard his message and that agree that inclusion is the best way to go!

Have a great weekend…

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