Tag Archives: disability

Bionic Eyes!

Last week bionic eyes went on the market in the US and the Uk! (Please be aware, it’s a surgical shot for the link, if you’re squeamish about eyeballs this may not be the link for you)

The only thing I want to know is – why on earth is it 99k? There are so many people who would benefit from this kind of science. Does it cost that much to make?

Anything that would benefit the disabled seems to come with a massive pricetag. I hope someday these kinds of innovations can be available to a wider range of people who need them.

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ADA Accessibility And Burlesque

I write about burlesque and disability again for Pincurl Magazine!

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February 5, 2013 · 6:02 pm

Cooking While Blind – Adventures In Not Burning Myself Or Others

I wrote a post about cooking while visually impaired – it is up over at Offbeat Home!

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January 31, 2013 · 11:30 am

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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The DSM is a Medical Text, Not a Plot Generator

I am tired of feeling like every time I see a mental illness article, I need to shield myself from the comments.

I am sick with fear every time I hear “mental health registry”.

I am undone by the lies media tells in their plotlines, using PTSD, schizophrenia, anxiety, depression, and therapy as plot points, punch lines and things people get over.

We can medicate, we can use therapists and we can find pieces of truth which comfort us in the darkness of our own existences – but this is something we all live with. Obsessive Compulsive Disorder is not a repetitive joke, it is not the thing which makes a private detective funny. PTSD is not the thing which makes Charlotte King angry and mean, anxiety is not merely fixed with a pill, and therapy should not be the joke of a 30 minute sitcom.

When do we stop using mental illness as a punching bag and start considering ways to help people who live with it?

It seems as though those with mental illnesses are cast into four categories in media: Out of Their Heads Crazy Violent, Nonsensical Crazy,  Functional But Silly Crazy, and Angry Crazy. These all have varying levels. For example, a savant might be in either the functional or in the nonsensical category, whereas often people with PTSD are only cast as angry crazy. schizophrenics are cast as out of their heads and violent. Always, or at least that’s how it feels.

These depictions are wrong.

Mental illnesses are diagnostic tools. They are not all the same.

My experience with PTSD is very different from someone elses’ and my triggers will be different. The way that I express my feelings about the diagnosis which I hold – very different from someone else.

The solutions are different too. For someone who is violent, perhaps medication and time in a hospital setting may help. For that matter, people who have mental health issues which impact their whole lives may need to be hospitalized just so they can get a grip on their own lives – hospitals are not places for just the violent. They are places where people can learn skills they need out in a world which is often harsh on those whose realities are different from the general populations. For someone with PTSD it may be a place to regain control of an episode, and to remember where they are in time.

We don’t need television shows to continue getting it wrong, to keep telling the stories of the mentally ill for us – and telling them badly. We don’t need to have the general public hear stories time after time that PTSD only affects people in the military. We don’t need to have the myths of OCD as funny fill the gaps in where knowledge should be. We should be learning about one another by asking questions, by listening, and by thinking harder than the TV set will encourage us to.

The fact is, mental illness isn’t just about being quirky or different. It is what makes us people. For some of those people, it makes them artists. It makes them see the world in different ways.

I have an ability to understand sorrow, and past pain in a way that some don’t. I have friends whose schizophrenia makes them better writers. Photographers whose stories tell tales of depression – and we wouldn’t know what that looked like were it not for them. Beethoven would not have been the artist he was without his madness and his deafness. Emily Dickinson would not have been the poet we love were it not for her profound agoraphobia. Sometimes these differences are what make us beautiful, and we can’t forget that even though we fear each other.

Perspective is everything – and we cannot forget the beauty inherent in a world of difference.

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Filed under Disability Issues, Language

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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Going Other Places & Talking To People

Tonight at 8:15pm at HuffPost Live I’ll be talking about my article for XOJane “I’m Disabled But People Still Don’t Think I’m Blind Enough”.

Please join me tonight for a frank discussion about disability and living in a world where it’s okay to ask “Are you really blind?”

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