Archive | January, 2013

Better off Dead than Disabled?

About three years after I had my stroke, I went to a funeral for a friend’s husband. He’d had a massive stroke. It was a stark reminderbetter off dead than disabled that not everyone’s stroke story turns out as nicely as mine did. While I was waiting for the funeral to begin, I heard someone say, “Perhaps it was for the best. He wouldn’t have wanted to live in a wheelchair for the rest of his life.”

I remember feeling like I’d been shot. I knew the woman who’d made the statement. I knew she’d spoken without really thinking, as people often do at funerals. I knew that she hadn’t meant the words to sound as callous to me, not long without my wheelchair, as they did. But I still couldn’t help but wonder if there was a part of her that believed it.

It was my first exposure to an attitude that’s unfortunately too prevalent: that you’re “better off dead than disabled.” And that was just a mild manifestation.

“I Made The Right Decision”

Stella Young is an amazing disability advocate. Feminist, journalist, and blogger for “Ramp Up” on the Australia Broadcasting Corporation’s Disability Gateway website, Miss Young uses her experiences as a disabled woman and wheelchair user to write passionately and insightfully about the issues facing disabled people today.

The first blog of hers that I read was about genetic testing for disabilities. She told this story about society’s belief in “better off dead than disabled”:

“A few years ago I was approached by a nervous looking woman on a tram on my way home from work. “Excuse me,” she said. “Do you have Osteogenesis Imperfecta?” With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it’s because they know someone else with it. So I was surprised by her next line. “I was pregnant with a baby with OI and I had a termination.” I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn’t quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, “I made the right decision.” Then she got off the tram.”

I was horrified. I absolutely support a woman’s right to choose – for whatever reason, even if it makes me sad. The idea of a woman choosing to abort a fetus just because of detected disability (and I acknowledge that perhaps this woman may have had other reasons as well, but that was not what she said, or even implied, to Miss Young) makes me sad, but it’s still her right to do so. I don’t support, however, marching up to someone with the same disability as the fetus and, unprompted and with no context, telling them the story!

“Who says that someone?” I told my friend over the phone later. “Who says to *anyone*, let alone a perfect stranger on public transportation, ‘My kid was going to be disabled like you…I’m glad I had an abortion.’”

(Miss Young took this much better than I would have, by the way…read about it here: http://www.abc.net.au/rampup/articles/2012/10/09/3606293.htm)

Where does “better off dead than disabled” come from, and when did it become okay to express that idea to the face of a disabled person? Are we that unworthy in society’s eyes of even the most basic level of respectful treatment?

Before You Dismiss That as an Isolated Incident…

Consider a series of tweets from a Twitter friend in the UK, using the hashtag #heardwhilstdisabled:

  • “‘If I were you, I’d kill myself’ (perfect stranger, me happily waiting to cross road in powerchair on way to work)”
  • (After some responses about how horrible this was)  ”It was better than the drunk who shouted I should have been killed at birth as I went past the pub!”
  • “Finally, the nastiest, shouted by drunk outside pub as went past in powerchair: ‘You should have been put down at birth’”

It’s worth noting that disability hate crime in England in Wales increased in 2011/2012 by 25% when compared to the previous year http://www.telegraph.co.uk/news/uknews/crime/9626664/Disability-hate-crimes-rise-by-a-quarter-in-a-year.html. Disabled people are not well-liked in the UK right now by the general populace. Cuts to income support for disabled people have been justified to the public with a government-supported media campaign insisting that the support system for disabled people is riddled with “scroungers”, or people defrauding the system.

The actual fraud rate is less than 1%.  And this is just one of the lies that forms the foundation upon which the government has built its case for systematically stripping benefits from disabled people who cannot work and declaring them fit to enter the workforce.

But that’s a whole other blog entry.

limbs1

I Know That I’m Probably “Preaching to the Choir” With Most of This

Maybe you could pass this post on to a non-disabled friend or colleague and ask them, politely and gently, and with the promise of non-judgement and an open dialogue if they’re interested in sharing their answers with you, to really consider these questions:

  • Do you believe that you’d be better off dead than disabled? If so, why?
  • Where do you think that this attitude came from?
  • What would it take to change it?

It’s hard for me to imagine how, even if all communities were totally accessible, that disabled people will ever be regarded as full community members, enjoying all the rights and privileges that non-disabled citizens do and having their contributions valued as equal to those of non-citizens, if the “better off dead than disabled” perception is out there. This is a fundamental issue that needs study and addressing.

I certainly don’t feel that I’m better off dead than disabled.

So, who has ideas about how to change this perception?

If you’re on Twitter, check out the hashtag #heardwhilstdisabled. It was certainly eye-opening for me.

Comments are closed

“I Don’t Care About You”: Thoughts on Accessibility and Disability Sensitivity

When I see buildings with a low degree of accessibility…outdoor wheelchair ramps covered with accumulated ice and snow…buildings accessibilitywith power doors or elevators that aren’t functioning…stores that use aisles as display space for merchandise, making the store difficult to navigate…I wonder if the people in charge of the building really realize what kind of message I, as a disabled person, come away with.

Accessibility…I Wonder…

I wonder the people in charge of these buildings with low degrees of accessibility realize that they might as well put up a sign that says (even if they don’t really believe it), “Disabled people, we don’t care enough about you as a potential customer/employee/volunteer to ensure that you can get into our building/get around it easily. Please take your money/abilities and expertise/time and community spirit elsewhere.”

I wonder if they realize how frustrating and depressing this gets after a while, especially after saying to a store or organization several times, “You know, if you can’t keep ice off of your ramp, you might as well rope it off, because it’s useless to people in wheelchairs and it’s just encouraging other physically disabled people to use it when it’s not safe.”

I wonder if they realize that inaccessibility sometimes makes me feel invisible in my own town, like people would just rather that I stayed at home and not bothered anyone with my needs. And I can handle low accessibility pretty well now. Plenty of people have much more trouble getting around than I do.

Accessibility is Good for Everyone

I wish that people would realize that universal design, accessibility and good disability sensitivity practices in businesses and organizations benefits everybody. If somebody in a wheelchair can get into a store and easily get around, so can a parent whose child is in a stroller, or a customer who has broken a leg and is using crutches. If the cashier asks at the cash register, “Did you find everything that you were looking for today?”, a customer with visual disabilities who has trouble reading signs can ask where a product is, or a customer in a wheelchair can ask for assistance getting a product down from a high shelf. Or someone with no disabilities at all who just can’t find what they’re looking for can also get the help that they need. Everybody wins.

Do you know any businesses that deserve high praise for accessibility, or that really need some work? Let me know and I’ll put them up on the “Accessibility Bests and Worsts” page.

Check out these posts for more information on accessibility and disability sensitivity:

http://www.girlwiththecane.com/disability-sensitivity-tips/

 

http://www.girlwiththecane.com/disability-sen…ity-tips-contd/ ‎

Comments are closed

Obama Inauguration Today

Today is Martin Luther King Day in the United States. It’s also Inauguration Day for President Obama.inauguration

It’s 5 am Eastern Time as I’m writing this, and CNN is on my television. Even at this early hour at the newscasters are talking about people gathering on the National Mall so that they can have a spot from which to view the Swearing-In Ceremony and Presidential Address seven hours from now. Even though there’s only supposed to be half the people at today’s Inauguration as there were at Obama’s Inauguration in 2009, apparently there are still people that feel strongly enough about it to get there before the crack of dawn to get a good seat (estimated 800 000 to show up today).

Accessibility at Inauguration Day

I didn’t give much thought in 2009 to accessibility during Inauguration Day, which seems odd to me now (not that I was there). But someone thought about it this time, according to USA Today. The Joint Congressional Committee on Inaugural Planning (JCCIP) made the following improvements to the Inauguration Day (and Week-end) proceedings to better accommodate the needs of disabled people:

  • Closed captioning of  Inauguration Day available on Smartphone
  • More manpower to assist with transportation and general information concerns for those trying to get around the city with disabilities (there are a very small number of accessible taxis available in DC)
  • 200 volunteers to assist physically disabled people to get on and off the Metro
  • Clearly marked accessible seating at the Inauguration for those using wheelchairs
  • FM devices for those that need an audio description of the parade

There’s also a website with information about accessibility on Inauguration Day: http://www.inaugural.senate.gov/2013/accessibility

This is the sort of thing that I like to hear. Everyone should have the chance to participate in a day like this.

Full article here: http://www.usatoday.com/story/news/politics/2013/01/18/obama-inauguration-disability/1846103/

Good Start, Obama…Keep It Up!

Congratulations to President Obama. I hope that a commitment to improving accessibility and creating opportunities for disabled people to participate in meaningful ways in all aspects of American life remains a part of his administration in its second term.

It’s not just Americans that are watching.

Comments are closed

Belgium Grants Marc and Eddy Verbessem, 46-year-old Deaf Twins, a Physician-Assisted Suicide

In Belgium, 46-year-old deaf twins Marc and Eddy Verbessem recently took their own lives with the assistance of a physician. Sorry, folks is a little long. Apparently I had a lot to say.verbessem

I should preface my comments on this story by saying that I do believe in a person’s autonomy over their own body and that the right to commit suicide is theirs. I don’t think that most people that commit suicide truly want to die – I think that they want some sort of pain to stop, and it’s tragic that some choose this “permanent solution to a temporary problem.” It’s devastating for those that are left behind. I’ve considered suicide at a couple of points in my life, and it’s always been at a point when I’m not thinking rationally about my circumstances or my options. But if I’d had the courage to do it, it would still be my right, however unfortunate it might have been.

I also support physician-assisted suicide for people who are terminally ill, in extreme pain, and have gone through counselling to ensure that this is really what they want. When people are that sick, sometimes they simply can’t physically takes their own lives, and in some cases a physician’s assistance is appropriate.

Marc and Eddy Verbessem were deaf, going blind, and scared for their future. They apparently had some other severe medical problems. But they did not fit the criteria that Belgium says people must meet in order to be eligible for physician-assisted suicide.

This decision, and the biases and assumptions behind it, make me highly uneasy. Downright scared, in fact.

“All that together made life unbearable

Blogger William Peace has written forcefully and often about the potential for abuse inherent in the decision to make physician-assisted suicide legal when it comes to disabled people. Not everyone in the medical community believes that disabled people could ever live a “normal” life. The assumption that because disabled people may not contribute to society or experience a fulfilled life in the way “normal” people do causes some doctors to encourage parents to abort fetuses that are going to be disabled, to withhold livesaving treatment from disabled people, and to make end-of-life decisions on their behalf (see list of links at the end of the post for posts that I’ve written about this).

Marc and Eddy Verbessem were extremely fearful of the genetic glaucoma that was claiming their sight. The idea of not being able to see each other, and of potentially being institutionalized, losing their independence, was so overwhelming that they sought the assistance of a doctor to give them a lethal injection. The Verbessem twins went to their doctor, David Dufour, to get his support for their request. He granted it. His report talked about the Verbessem twins’ fear of facing life both deaf and blind, and of other medical conditions: “…one had respiratory problems that meant he could only sleep upright. The other had spinal cord damage and could barely walk. Doctors were unable to improve the Verbessem twins’ condition, and many medications could not be used because of their fragile eyesight. It had come to the point where they barely ate, and they had been begging for months to be allowed to die.” http://www.examiner.com/article/deaf-twins-euthanized-marc-and-eddy-verbessem-make-controversial-choice

So, a doctor directly supported  Mark and Eddy Verbessem’s idea that if they acquired another disability, they had nothing else to live for, and might as kill themselves. Living as deaf-blind would not have been easy, granted, and would likely have put the Verbessem twins in a position where they needed more support, and more skills-building to learn to communicate and to maintain the level of independence that they desired. But it sounds from the article as if they had a loving, supportive family, and time to prepare – they spent two years looking for a doctor that would give them the lethal injection. Perhaps going to live in an institution was not the only alternative for the Verbessem twins.

But a doctor decided that he agreed with two grieving men that living with two major disabilities would be “unbearable”, and got Marc and Eddy Verbessem started on the road that led to their death. Shame on him. I think that William Peace would agree, but I’ll wait and see if he wants to weigh in.

David Dufour didn’t give the ultimate approval to the decision, though.

“There certainly was unbearable psychological suffering for them”

I was happy to see in later reports about this story that Mark and Eddy Verbessem were evaluated by a psychiatrist and by several doctors before the decision to grant them a physician-assisted suicide was made. But, even though Professor Wim Distelmans, who ultimately approved the decision, assures that “There was certainly unbearable psychological suffering for them,” http://www.smh.com.au/world/euthanasia-twins-had-nothing-to-live-for-20130115-2cq9z.html, I’m not at all convinced that they should have received approval for this reason.

Here’s the problem: Mark and Eddy Verbessum were not terminally ill or in unbearable physical pain, which are requirements for being approved for physician-assisted suicide suicide under Belgium’s laws. Not a high degree of psychological pain. Not being so determined to take one’s own life that one is begging to die and stops eating. That’s when professionals do assessments to see to what degree a person is at risk of harming him- or herself and considers whether involuntary invention (and, if so, the nature, intensity and duration of that treatment) is appropriate.

Making “unbearable psychological suffering” a reason to grant someone physician-assisted suicide just baffles me. I used to be an admin on an Internet support forum for people with mental illness. I don’t want to think about the number of people out there who at any given time are in a state of psychological suffering that they (and I) would describe as unbearable. I’ve been at the point where everything looks so dark that death looks like the only way out, and I can empathize with the people that are in that dark place and thinking of committing suicide. But would I encourage them to do so? Absolutely not. And would I suggest to lawmakers that they set a precedent where someone in that dark space even once got assisted to suicide because their psychological suffering seemed unbearable to them? No, no, and no. It’s irresponsible, and the fact that it happened is a tragedy. Shame on you, Dr. Distelmans.

There’s More

Belgium is also thinking of extending the right to request physician-assisted suicide to if they are capable of discernment or affected by an incurable illness or suffering that we cannot alleviate.”

In my province, you can’t even buy a lottery ticket until you’re 18.

We make laws to keep young people from driving, voting, and having sex too early because their brains are not developed enough to thoroughly anticipate and understand all the consequences of their actions. In fact, a young person’s brain isn’t fully developed until after over 20 years of age.

That this legislation is even being considered scares the living daylights out of me.

What Should Marc and Eddy Verbessem Have Done?”

One of the links has reported that there’s been harsh criticism of Mark and Eddy Verbessem for their choice. I hope I don’t come across as one of their critics, because I’m not. As I said, they have the right to do what they want with their own bodies. These were men that lived in their own flat together. Presumably they had the ability to take their own lives without a doctor’s aid (someone please tell me if they find information that says otherwise). It’s their right to do so.

I am, however, critical of a system that, from what I have been able to find out about this case, pushed an abilist agenda that reinforced two mens’ perception that death was preferable to more disability, believing in that idea so much that it relaxed its own laws about physician-assisted suicide.

It just seems like that this could have been turned around, and I’m wondering where the people who are supposed to want to prevent suicide were in the two years that Mark and Eddy Verbessem were actively searching for a doctor to help them die.

Here are the links about disabled people and the medical community to which I referred earlier:

http://www.girlwiththecane.com/downs-syndrome/ – Genetic discrimination in babies with Down Syndrome

http://www.girlwiththecane.com/awa/ – Man with Down’s Syndrome leaves hospital with DNR order that he didn’t know about

http://www.girlwiththecane.com/update-on-amelia-rivera/ – Amelia Rivera’s struggle to get a donated kidney due to her intellectual disability

http://www.girlwiththecane.com/paul-corby/ – Autism cited as a reason that Paul Corby didn’t get a heart transplant.

Comments are closed

Former UK “Madam” Becky Adams Wants to Open Brothel for Disabled People

I found an interesting article today about a former madam in Britain, Becky Adams. She’s currently acting as a sort of facilitator for disabled people who

Becky Adams

Becky Adams on the cover of her book

are wanting to explore their sexuality with the assistance of sex workers, ranging from those who are willing to be sexual partners to third-party “fluffers” (Becky Adams’ word) to help “set the scene” and assist with logistics. Becky Adams’ dream is to set up a fully-accessible brothel where disabled people can access these services.

http://abcnews.go.com/Health/uk-madam-plans-brothel-people-disabilities/story?id=18175460

 

Everything that Becky Adams is doing now is legal. A brothel would create legal challenges in the UK and in most parts of America.

I have mixed reactions to what Becky Adams is doing.

On the one hand, I commend Becky Adams for her commitment to providing an outlet for people with disabilities to express their sexuality. Society does tend to assume that particularly severely physically and or developmentally disabled people are nonsexual. It’s unfair to them, as sexuality is a part of life and all people deserve the chance to explore it. It’s also unsafe for them, as it often leads to them not getting information on sex and sexuality that allows them to recognize and deal with sexual abuse. Becky Adams has obviously done her homework on the barriers people with a variety of disabilities face to having a fulfilled sex life, and both the work that she does now to remove those barriers and her desire to create an environment where disabled people may have their sexual desires met and meet the needs of another person (whether a sex worker or a another person of their choosing with a sex worker as someone to assist with logistics) is, I think, admirable. Apparently some of the sex workers involved with the work that she does now even do it for free.

But it’s not addressing the real issues.

Becky Adams, Brothels, and Keeping the Sexuality of Disabled People Backroom and Taboo

When I trained to become a Developmental Services Worker, we didn’t spend a great deal of time on learning to support intellectually disabled people as they explored their sexuality, but we did learn about the importance of advocating for their right to express the sexuality in a way that feels natural to them, provided that all parties are consenting, just as non-disabled people do. I know that non-disabled people use the services of sex workers and/or go to brothels. I’m not going to get into the issues surrounding that, because the debate over whether the sort of liaisons that Becky Adams facilitates are in the best interest of the sex worker or the customer is something about which one could write an entire book. From an equality standpoint, however, it’s nice that someone has taken the pains to make sure that the experience of using the services of a sex worker is an option for both disabled and non-disabled people.

However, regarding the brothel issue in particular…

I’m uncomfortable with the idea of disabled people feeling pushed into a brothel environment because they feel no other option for exploring their sexuality with their partner. I think it’s noble of Becky Adams to adapt the traditional idea of a brothel to give disabled people and their partners a safe place to be sexual with each other. But it still stuffs the sex lives of disabled people into a (currently illegal, in most places) back room, where society doesn’t have to deal with how the idea of disabled people being sexual beings makes it uncomfortable. Criminalizing the sex lives of disabled people is not a viable solution to a problem that actually stems from society’s attitudes toward sex and disabled people.

If you can’t see how it’s a problem with society’s attitudes, consider this. I don’t know the statistics on how many non-disabled people living in environments that they consider their own home (as intellectually disabled people are told to consider group homes) feel driven to access a brothel environment when they encounter situations in which it’s difficult for them to engage in sexual activity with someone (lack of privacy, needing assistance with logistics) , but I’m sure the number is small. There are other options for them that may not be options for a disabled person: the other person’s residence, a hotel, etc. For severely physically disabled people who do need assistance with positioning and other logistics, sex may seem like an impossibility. Is the fact that they can’t get support a violation of their human rights, as Becky Adams suggests? Yes. I was never trained to assist people in this very intimate way, and my DSW training was supposed to cover meeting all the needs of people that I supported. We’ve not found a way, as service providers and staff, to feel comfortable enough to address these very real needs. It’s only been in the last couple of years that I’ve seen any recognition that disabled people are sexual people with sexual needs.

While disabled people should have access to brothel services as long as non-disabled people do, brothels and the services that they provide cannot become the only way that disabled people have full access to their sexuality. Families and service providers need to start talking about this, and about the ways in which they can sensitively provide education, support, and “safe space” in which disabled people can explore sexuality the way that non-disabled can.

Thank You, Becky Adams

Despite my concerns, I do thank Becky Adams for what she’s trying to do. She’s willing to go the jail over her belief that disabled people need the brothel that she’s proposed. I admire her courage, and her commitment to giving some disabled people options that they’ve never had.

The rest of us need to pick up on what she’s done and start running with it, though.

Comments are closed

I’m Still Here

Not feeling all that well, but hoping to get back here and do some writing this week. Thanks for your patience. :)

Sarah

Comments are closed

Stop Copying Plugin made by VLC Media Player