Tag Archives: deaf

Thoughts on Physician Assisted Suicide


They were twins. Both deaf, both cobblers. They never married, were very close to their families, and they spent their days together. They suffered from other medical conditions such as spinal issues, but the full roster of their illnesses is unknown to me. On December 14th 2012 they chose to use the right of Belgian citizens to voluntarily euthanize themselves. They did this because they were going blind as a result of glaucoma, and they could not bear the idea of being unable to see one another, or the idea of being institutionalized.

I am a supporter of right to dignity in death measures in the law; I believe that when people are suffering, when they are in pain, that they should be able to die rather than to suffer if they will not get better. To spare their families the pain of having to witness their death.

But I can’t get past the uncomfortable feeling that these men were choosing death over life. A life that might not be entirely unlike mine. Certainly the idea of being blind and deaf terrifies most people – but I am both. Neither are complete conditions for me, but I can’t shake the the fact that I am reading about someone deciding to kill themselves because they are like me. The story challenges my ability to be fully on the side of allowing people to use the medical establishment to help people die.

In Belgium the law reads as follows:

To make a legitimate euthanasia request, the patient must be an adult, must be conscious and legally competent at the moment of making the request, and must be in a condition of constant and unbearable physical or psychological suffering resulting from a serious and incurable disorder caused by illness or accident, for which medical treatment is futile and there is no possibility of improvement.

The physician decides whether the disorder is incurable based on the actual state of medicine, and the patient alone determines whether suffering is constant and unbearable. The physician must have several conversations with the patient in which he ascertains whether the patient experiences his/her suffering as constant and unbearable.

The physician must inform the patient about their medical condition, prospects, and possible alternative treatments, including palliative care. He must consult another independent physician about the serious and incurable character of the condition. This physician does not need to be a palliative care specialist.

Taking voluntary euthanasia seems to me a little premature in this situation. Certainly it is tragic to not be able to see ones brother – the twins had lived together their whole lives, never having married. Not knowing the twins personally, I cannot speak to their quality of life, but for some reason I can’t help but feel that their life experiences may have contributed to their inability to conceive of a world where they could not see, and where they could not live without some help.  I feel like the more people with disabilities are encouraged to experience the world,  the world seems less bleak. I know that traveling has made me more confident about my ability to engage with the world, not less.

The first doctor who was approached to euthanize the twins refused them, stating: “There is a law but that is clearly open to various interpretations. If any blind or deaf {people} are allowed to euthanize, we are far from home. I do not think this was what the legislation meant by ‘unbearable suffering’.

It seems that the twins had more medical issues than simply the glaucoma, but I can’t deny that the idea of helping people commit suicide just because they are going blind or deaf is discouraging. There are so many people who tell me that they would just die if they couldn’t see – like I can’t. So many people who have said that they would rather kill themselves than not be able to hear.

We live in a world of possibilities, one where adaptive devices, medical changes, and opportunities to live normal lives are cropping up every day. The surgery I had at 6 months old  to give me the sight in one eye has improved vastly. I’ve met people who have had cataract surgery in the last year who see better than they did before the surgery. We can’t simply give up because we’re scared.

Since I was not in the situation myself, I can’t say if this was right or wrong, but I can say that it shook me very deeply, and made me question a lot of things about the way I live. 
I can’t help but be uncomfortable with this choice, but I can educate myself about the choice they made. There’s no changing their decision, but hopefully we all can strive toward making the options for people facing deafness and blindness less bleak, and more hopeful. I hope that if I do go completely blind, or completely deaf, or both that there will be options which do not include suicide. Because I don’t want to give up.

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Dolls for Disabled Children

I grew up with American Girl dolls. I had a Kirsten (because my heritage is Swedish American) and a Molly – because she had glasses! I loved that I had a doll who had to wear glasses like I did.  It definitely helped me to understand that glasses were a normal part of my image and nothing to be embarrassed by.

I only wish they’d had the hearing aids for their dolls when I was a child. When I was 10 or 11 I got my first hearing aid. It was a behind the ear, purple, and you could see through it to see all the gears and pieces that made it work. When I first got it, I thought it was really cool. But then my classmates figured something out – they could tease me using the hearing aid. Whistling into it, yelling into it. One kid chewed gum right next to me as loudly as possible.

So I stopped wearing my hearing aid.

Like the glasses, I feel like having a doll who can wear a hearing aid, or who uses a wheelchair, or crutches – it normalizes the disability for children. American Girl is doing something which could theoretically help make growing up disabled a lot easier. Being able to show your friends or classmates “My doll has a hearing aid like I do” might help. Or maybe it won’t. But at least on the inside, you can play with a doll that has your disability, and you can take out your dolls hearing aid just like you do yours, and it would help YOU the child normalize being a person who needs adaptive devices.  It isn’t just adaptive devices which the company is offering, however. They are also now offering dolls without hair – so that sick children can have dolls that look like them too. Again, acceptance is power.

To me, this isn’t just dolls having accessories – it’s a company choosing to help children understand themselves better, and to bring acceptance of themselves into their lives. There’s not a lot of movement when it comes to helping children with disabilities be accepted as “normal” in mainstream society. The wheelchair using Barbie named Becky was still used to reinforce the inspirational rhetoric surrounding people with disabilities, whereas the American Girl doll isn’t trying to say how amazing people with disabilities are, it’s trying to say that they just ARE.

The intention behind these dolls is almost as important as the dolls themselves, because their packaging, advertising, and description does impact children and how their families interact with the toys themselves. The presentation of a wheelchair Barbie may be significantly different from that of an American Girl.

I for one am pleased to see a mainstream dollmaker beginning to accept difference in ability, as they have always accepted difference in skin color, and in eyesight. I look forward to their continued push forward for diversity and acceptance.

 

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Because The Disabled Vote Doesn’t Matter

“Senate Republicans have thwarted an attempt to pass a U.N. rights treaty aimed at advocating equal rights for disabled people, a strategy that Democrats said is simply centered around scoring political points.” – The National Monitor

I have a really big question for Senate Republicans. Why on earth would rights for disabled people NOT score you political points? Contrary to what many people seem to believe, disabled citizens actually do have the same rights as able-bodied citizens. We vote, just like you do. And we will choose to vote for whomever supports us in the goal of being more equal to our able-bodied peers. Perhaps that doesn’t mean that I’ll ever drive a car, but it does mean that I have hope for the future that this country will become more accessible for us all.

Part of that requires this U.N. Treaty to pass. Which, would be fantastic if it did, apparently even the republican parents of developmentally disabled children cannot foresee a better future without slamming “unelected forces” which would actually make the United States treat their children better than it currently does. Oh, which political person was this?

Former Republican presidential candidate Rick Santorum, although the parent of a developmentally disabled child, came to Washington, D.C., to lobby against the treaty — claiming it to be an attack on American sovereignty. – The National Monitor

So, not only is he against it because it would stop America from being America, he actually went to D.C. to lobby against it? Seriously, guy? Furthermore, other republicans have stated that this U.N. Treaty would prevent parents of disabled children from making good choices for their children by stopping them from say, homeschooling. RIGHT. The treaty doesn’t have an enforcement mechanism, it’s just there as a set of guidelines! Jon Stewart covered this as his opener for the show last night – and while I felt like a lot of his comments were totally spot on, I was very disappointed that Mr. Stewart only made comments about wheelchairs.  I know wheelchairs are the easy target, but seriously? We could have used some more humor.

“We are disappointed that the overwhelming majority of Senate Republicans today blocked the Convention on the Rights of Persons with Disabilities, which would enshrine American standards that have been developed through decades of bipartisan cooperation.  Ratification would require no changes to U.S. law, as the United States already leads the world in promoting and protecting the rights of persons with disabilities,” said Carney. “However, it would position the United States to support extending across the globe the rights that Americans already enjoy at home. This in turn would improve the lives of Americans with disabilities — including our wounded service members — who wish to live, work, and travel abroad.” – The National Monitor

Well. We sort of lead the world in terms of treatment for people with disabilities. Some of the most compassionate treatment I have received as a disabled woman has been while traveling abroad. In France, I cut lines and didn’t have to pay for entry into any historic places — hell, I even got to touch statues at Versailles because I have a visual impairment. I have felt up things which were once owned by French Royalty. I am okay with this. At the Centre Pompidou in Paris, they even have works of art which have been translated into black and white, and then made into tactile art – in this way, blind and visually impaired patrons can experience artwork by the masters when they couldn’t see it.  In London, I was able to sit in the front row for multiple large-scale productions – and I could bring a companion with me to see the show at half price as well. I could actually afford these ticket prices.  I saw “Equus” I saw many shows at the Globe, I saw “Wicked” for $50, US and I sat in the front row.

I know these seem like small things compared to such issues as ADA accessibility to buildings, or how we access things like parking spots – but the fact of the matter is, if you’ve got a disability you may not be able to access art in the same way your able-bodied peers do.

In the US, I’d love to go see an opera at the Met, or see Glengarry Glen Ross on Broadway. But front row seats are over $300 in most places, and are entirely inaccessible to me. They provide concessions for the hearing impaired, but for the visually impaired there is little in the way of accessibility.

The reason why I bring all this up is as follows: If we’re going to be a leader in terms of equality for the disabled, we have to stop patting ourselves on the back. We have to start legislating for what is right, even if it scares the bejeezus out of the republicans. And that starts with signing treaties to protect the rights of the disabled across the globe – by standing with other nations, we are able to confirm that disabled people aren’t just citizens of our own country, but of the world.

The point is, voting down a U.N. Treaty based on a bill which a Republican President signed into law because you’re afraid it’ll cost America its sovereignty is bullshit. The Senate knows better than that. And they knew it.  I’m tired of being told I’m not equal, and that other disabled people around the world are told they aren’t equal more often and more vehemently than I am.

We have to have full and equal access. To public transit (I’m looking at you, New York City and the PATH), to theater (Hi Broadway), to education (AHEM many academic institutions), to politics (TAMMY DUCKWORTH!!), to healthcare (many people with disabilities are denied transplants based on their disability), to housing (Hey, UK. get your head out of your ass), to many many other things.

So here’s the deal. Sign the treaty, and stop using lofty political ideals to block rights for people with disabilities. We can hear you, we can see you, and we can vote you out of office.

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Dressing in the Past to Learn in the Present

The Mary Sue ran a piece about a young woman named Stella Ehrhart yesterday. She does historical costume for school every day. By which I mean that she dresses as different historical figures each day for school. In the article she is pictured dressing as Helen Keller, Billie Holliday, Grace Kelly – she pulls most costumes from a book called 100 Most Important Women of the 20th Century.

I was that child. My halloween costumes were almost always historically themed (sometimes fictional, since I had a penchant for Sherlock Holmes.) I had a medieval themed birthday when I was seven, a Sherlock Holmes Murder Mystery Dinner when I was 9 (Victorian themed costumes requested), a Foreign Dignitaries Tea when I was 11 (come as a historical foreign leader and celebrate my birthday), a Revolutionary War themed birthday party when I was 14.

I also wore Victorian clothing to school a lot, and in Middle School and High School, during Spirit Week, I attended classes in full Victorian garb on ’80s day. Because they didn’t specify which eighties.

I bent genders while I was cosplaying history a lot of the time – but I did dress as women too. I think in my own explorations the lines of gender became a problem for those surrounding me rather than issues of cultural appropriation which may be at play here.

I have always loved wearing historical costume. I have worn actual Victorian clothes as Halloween costumes, dressed as Suffragettes and flappers, political figures and Presidents. For me it was a part of my passion for history – and it still is. While we’re talking about how fabulous it is that this 8-year-old girl is dressing up as historical figures every day, adults do it too. I attend Jazz Age parties in New York City, I’ve been to the Jazz Age Lawn Party, to Wit’s End, to many other events where some people do go far to wear appropriate era clothing. I hope that someday, Stella gets to meet the adults who value wearing the clothing of different eras as much as she does.

Basically, I think this kid is awesome.

That being said, I do really hope that the adults in her life are talking to her about the differences between her and the people she portrays on as she explores history. I hope they explain to her that Helen Keller’s disability is not a disability she has, and that putting on her disability would be inappropriate. What I mean by this is, I hope she’s just dressing as these people, and not trying to act like them. If she’s writing in peoples hands, I’d feel like that was an inappropriate use of the historical figures she admires. I’m sure there will be other discussions she has with people – about race, and not appropriating others skin colors or cultures. Essentially, I hope she learns where the line is between respect, and appropriation. So long as she’s not putting on racial inflections of language, I think she’s got it all right.

I’m not saying Stella should stop – I think she’s doing something really cool and I want her to continue. But I just hope that people are having the childhood versions of these complicated discussions with her now, so that when she gets older, she has an understanding of why this might make people uncomfortable. It’s not easy, but I hope that along with admiring and becoming these historical figures, she learns to respect the differences between them, and to interact with those differences in thoughtful ways.

She’ll make one hell of a historian someday if she does.

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The Paralympics and Why I Didn’t Watch Them

I wanted to watch the Paralympics, but there’s no way for me to watch them. I don’t have a television, because it is too hard for me to watch things on a screen far away – but even more problematic than that, I live in the United States.

It is because I don’t have a TV that I didn’t realize NBC didn’t show the live footage of the Paralympics, even though they’re the only network in the USA that has the rights to broadcast it. Their 90 minutes of coverage didn’t air until September 16th!

According to the chairman of the IPC the United States is “ready” for the Paralympics. I have a question about that – is there a time when the United States wasn’t?

It’s fascinating to me how on the one hand, everyone calls disabled athletes “inspiring” and looks at them as reasons for able bodied people to not make any excuses (a rhetoric which I find extremely problematic) yet still we are denied any coverage of an important sporting event.

People complained about the lack of coverage for the regular Olympics, they did it all over the web, but I didn’t see much of anything complaining about the Paralympics coverage until very recently. From what I’ve seen from poking the internet, there *was* online coverage, but it wasn’t very well publicized. So with little coverage and even less publicity, I have to draw the conclusion that NBC doesn’t value disabled atheletes.

I am so glad that President Obama greeted Olympians and Paralympians during the reception this September. I only wish that the coverage had been more widespread, and that the publicity had been more widespread.

I wish I could have sat in the sports bar on my block, and watched blind swimmers, and wheelchair using fencers, and cheetah feet wearing runners while I drank a Magners.

But that’s not the country I live in.

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Adaptive Technology Should Not Cost More

Normally, I will not ask my readers to sign petitions – and I recognize that their effectiveness is somewhat disputable. But today I’m writing about this because the Iphone has been an excellent tool for me.

With GPS Maps, I’ve been able to figure out where I am, and get lost far less frequently. My Iphone lets me change font size and get magnification.
FaceTime is a great way to give Deaf customers technology which will change the way they communicate with their friends. As a hearing impaired person, while I do not need to use sign, I fully appreciate the extremely important nature of the improvements technology have made in our lives.

AT&T charging deaf customers for a voice plan is asking them to pay for a service that they will probably never use. Allowing them to pay for services rendered is practical. Asking them to pay for services left entirely unused is not.

Here is the link to the petition: https://www.change.org/petitions/at-t-stop-discriminating-against-deaf-customers

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In Defense of a Name

And to piggyback on the previous post – This is one of those news stories that is real, and therefore more ridiculous than parody!

A deaf three-year old in Nebraska is being told to change the way in which he signs his name because apparently, the hand signal looks too much like a gun and therefore violates their weapons policy.

Sign isn’t something you can just change for school policy. This is the way in which a child communicates with his WORLD. I’m not super familiar with sign language,  but I cannot imagine that it is easy to explain to a three-year old that the way he says his name scares his teachers.

I feel like this really sets up a problem for him early on in his schooling, already prioritizing the community over his needs as an individual with accommodations. To me, telling someone that the way in which they communicate violates a “policy” is ludicrous. It is also harmful – and it sets up the expectation to his peers (though they are not aware of it now) that his language is little more than a challenge to policy, and is not the avenue to communication.

I would hope that the school system will recognize how incredibly inappropriate this is, and in the future will prioritize his needs, and not create a situation in which he feels like an outcast in the future. Having been the outcast in school, both from my administrators and my peers, I hope his future is brighter and less frustrating.

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