Tag Archives | Down’s Syndrome

AWA – A Shocking Story of Ableism by a Hospital

I talked recently about institutions, and how many of them were environments that left people with intellectual disabilities AWAlittle to no control over their lives or power to make basic choices about what was right for them on even the most fundamental level. I’ve also written about how some members of the medical community (or even families themselves – see the posts that I’ve made about Annette Corriveau and her belief that she should have the right to terminate the lives of her two adult children with severe disabilities) believe that people with severe disabilities don’t have anything to live for. When those two things attitudes toward people with disabilities – the idea that non-disabled people have the right to deprive them of control over their lives and to take their power to make choices on a fundamental level, and that their lives aren’t worth living – combine, you get horrid stories like those of the man that the media is referring to as AWA.

Doctor Puts Do Not Resuscitate Order on Patient With Down’s Syndrome Without His Consent or Knowledge

http://www.bbc.co.uk/news/health-19570364

I know we’ve discussed ableism in hospitals before, such as Amelia Rivera and Paul Korby and their organ transplant refusal issues, and the struggle that mother’s sometimes have to get medical treatment for infants with Down’s Syndrome. But nothing beats coming home from the hospital and finding a DNR in your luggage that you didn’t know about (let alone consent to).

AWA, a man with Down’s Syndrome and dementia, found himself in exactly that position after being released from The Queen Elizabeth The Queen Mother Hospital in Margate, Britain, last year.  51 years old, AWA was in the hospital to have a feeding tube fitted. His attorney, Merry Varney, says that this is an extreme case, but that doctors frequently authorize DNR orders “without consent or consultation”.  http://uk.news.yahoo.com/downs-patient-not-resuscitate-row-160531147.html

The DNR stated that staff was not to perform resuscitation on AWA in the event of a cardio or respiratory arrest with no provision of review, because of “Down’s syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties”. The family was not told about the DNR either, even though they say that they and a carer were there to visit with AWA almost daily.

This is beyond reprehensible.

Medical Establishment, Meet Me At Camera Three

I’ve covered some low ways that doctors have treated people with intellectual disabilities and their families, but this is…pretty goddamned low. Thank God the doctors that have cared for the people I’ve supported in my career have been, almost without exception, very attuned to the issues involved with working with this particular population…treating them with dignity and sensitivity…because if any of them had tried to pull a stunt like this with people that I supported, they’d be toast. I hope that the doctor who signed off on this DNR never practices medicine again, and that the family takes the NHS down with their lawsuit.

Too harsh? No. None of the reasons for the DNR are justifiable, on their own or with any other reason. There was simply a decision made that, if something should happen, this person was too disabled to live a life that was really worth bringing him back to.

In addition to being disability discrimination by a hospital, that’s an insult that cuts to the bone – to AWA, and to everyone who’s life he’s touched. And it’s a shocking (and disgusting, quite frankly) abuse of the medical establishment’s power.

It’s also a disrespect to the system in which all doctors and nurses work. Informed consent for these sorts of things is a cornerstone. And if there were concerns that AWA didn’t have the capacity to give consent, the hospital should have tracked down the next of kin and talked to them – not given up because no one couldn’t find them at the hospital (as the hospital says they couldn’t).

Everyone involved in making this DNR legal should have known that.

Beyond AWA – This Is Getting Old

I’m getting tired of saying this. I’m almost 35, and I’m getting middle-aged and cranky.

Enough with the blatant discrimination.

It’s the 21st century, and it’s time that people got with the program.

If you think that it’s okay to violate someone’s rights because they’ve got a disability – you’re wrong. It’s really that simple. That sort of discrimination is called ableism, and there’s just no place for it anymore.

And it’s time to start holding corporations and systems that perpetrate systemic ableism accountable. Yes?

But where to start…I’ll have to do some thinking about this over the weekend…

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Disability Discrimination by Airlines – Enough is Enough

I blogged about disability discrimination by airlines not long after I launched this blog (http://www.girlwiththecane.com/physical-disabilities-1/ ), when I learned that sometimes airlines insist on breaking down electric wheelchairs to put into the luggage hold for a flight even when it’s not necessary. I also talked about a story where an airline returned a wheelchair to it’s owner unassembled at the disability discrimination by airlinesend of the trip and just said, “Sorry”.

I’ve heard about other stories of disability discrimination by airlines since then.

Disability Discrimination by Airlines: Physical Disability

William Peace regularly talks about stories of disability discrimination by airlines in his blog, “Bad Cripple”. Peace is a paraplegic that regularly travels by airplane. In a post that astounded me (http://www.badcripple.blogspot.ca/2012/06/cant-you-walk-little-bit.html), he talked about an experience where airline staff that were supposed to be assisting him to exist the plane said:

  • “Just walk a little bit to get to the wheelchair.”
  • “You can’t walk just a little bit?”
  • “You mean he cannot walk at all? What do we do? How do we get him out of the seat?” (This after he’d told the staff repeatedly that he needed a straight-back wheelchair to get off the plane and out to his own wheelchair).

He was on the plane for 45 minutes after it landed before they figured out how to disembark him. That could make a person late enough to miss a connecting flight, particularly if they have to board that flight in a wheelchair.

And according to Peace, it’s not far from how he’s normally treated as a passenger in a wheelchair:

“When one travels via any American carrier and uses a wheelchair it is an invitation for abuse. There is a deeply entrenched bias against people with a disability in the airline industry–especially paralyzed people who are perceived as a burden and flight safety risk. European based airline carriers are even worse. What I wrote about pales in comparison to other experiences I have had. More than once I have crawled out of a plane in frustration and anger.” (bolding mine)

Disability Discrimination by Airlines: Other Disabilities

Peace’s blog also has stories about disability discrimination by airlines against people with autism, people with intellectual disabilities, and, most recently, a story that’s gotten a lot of attention about American Airlines refusing to let a 16-year-old with Down’s Syndrome and his family fly. http://latimesblogs.latimes.com/lanow/2012/09/teen-with-down-syndrome-barred-from-american-airlines-flight.html

Joan and Robert Vanderhorst and certain that their son, Bede, is the latest target of disability discrimination by airlines. The family has flown together many times without incident. The only difference this time was that they decided to fly first class. They were apparently barred from flying because the pilot was concerned that Bede was too unruly to fly to be seated so close to the cockpit. There was a concern that he could become a disruption if the pilot had to make an emergency landing. Video of Bede that Joan took while the family was being informed of this decision shows him sitting quietly at the gate.

The family was rebooked on a United flight. They were put in the back row of economy class, and no one was seated around them.

From the media acounts…it’s suspect at best. Peace has much stronger feelings:

http://www.badcripple.blogspot.ca/2012/09/american-airlines-bigotry-abounds-yet.html

http://www.badcripple.blogspot.ca/2012/09/american-airlines-attempts-to-explain.html

He’s been tracking these things for much longer than I have. I’m more inclined to go with his assessment that American Airlines simply didn’t want someone with Down’s Syndrome in first class on the airplane…perhaps not even on the airplane at all.

What to Do About It?

I’ve been lucky (very lucky, apparently)…I’ve not had any truly negative experiences with airlines since I’ve had my stoke, and I’ve flown several times. It does seem that at the very least the policies and procedures around assisting passengers with disabilities need to be updated, and that airline and airport staff need to undergo mandatory disability sensitivity training. But who will enforce this, and handle complaints?

Peace says that he complains to the Department of Justice when he experiences profound disability discrimination by airlines, but  that it doesn’t do much good. Who do you complain to when the DOJ won’t do anything?

The fact that no one will stand up to the airlines about these injustices revictimizes the people that go through them. And sometimes there really is no choice but to fly – it’s like making someone go back to an abuser and say, “I need you…please don’t hurt me.”

If you think I’m being melodramatic, go back and read Peace’s words again. He’s crawled off a plane rather than put up with the way the airlines treat him. I don’t know what was going on, to put him in that headspace, but I’d argue that those experiences were trauma-inducing. He might disagree (making him, as I’ve suspected, a far stronger person than I am.)

But I think we can all agree that disability discrimination by airlines has to stop. Somehow, they must be held responsible for these actions.

 

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Gabby Giffords and Emotional Manipulation By the Democrats

I don’t usually blog on the weekends, but last night I saw video of Gabby Giffords saying the Pledge of Allegiance at the Democratic National Convention, and I knew right away that I had stuff to say about it. Stuff that’s not likely to make me popular, but…I’ve never worried about that before, so….gabby giffords

Before we get into that, though, some quick words about the DNC. Wow. I missed both Biden’s and Obama’s speeches because I was talking to a good friend on the phone, but I plan to watch them on YouTube this weekend. But I saw just about all of the other major speeches, and the tone of this convention was, for me, a one-eighty from the RNC. It was energizing, hopeful, focused on Obama’s accomplishments instead of ripping on Romney (for the most part), and really just a pleasure to watch. I’m not going to pretend that the party doesn’t have it’s shortcomings (aptly covered by Jon Stewart on “The Daily Show” over the course of the week. He’s always been good at demonstrating that he can rip into whatever whatever party is in power when they deserve it), but aren’t we talking about the lesser of two evils at this point? It looks to me like the Democrats are the lesser by a *substantial* margin at this point.

But back to Gabby Giffords.

Gabby Giffords Pledges Allegiance

Readers may remember that former Congresswoman Gabby Giffords was shot in the head during what was presumed to be an assassination attempt on her in Tuscon, Arizona in 2011. She survived the attempt, but was critically wounded. She has spent the time since the shooting on recovery: surgeries to repair the damage caused by the bullet, physiotherapy and occupational therapy to restore function to her left side,  and speech therapy. Gabby Giffords now walks with a cane, has problems with her vision, and still goes to speech therapy to address issues with aphasia.

Her story of recovery is certainly inspiring, and it was great that she could be at the DNC. I didn’t see Gabby Giffords recite the Pledge of Allegiance, but the clip that I saw and the activity on my Twitter feed told me that people were certainly affected by it. People talked about her strength, her bravery, and how they were crying.

I admire Gabby Giffords too. But I didn’t cry. I thought, “So, the Dems paired a person with disabilities with the Pledge of Allegiance to create a “tug-at-your-heart-strings” moment.  Looks like it worked.”

I realize that it’s not quite that simple with Gabby Giffords because she was also a public figure who was the victim of a terrible unfairness and this one of her few public appearances since the shooting. But doesn’t that create even more of an argument for emotional manipulation?

Willing to Admit Crankiness

Not that there weren’t a whole lot of moments at both conventions that were designed to play on peoples’ emotions. Every time a speaker tried to do the “call and respond” or tried to get people to chant something, that’s a big-time play on peoples’ emotions. I often found myself in danger of getting swept away by the emotion in particularly the DNC.

And I do admit that I’m a little hot-under-the-collar about using people with disabilities to manipulate public perception this week anyway. I caught a Facebook discussion about a company that apparently gave itself a pat-on-the-back via social media for using children with Down’s Syndrome in its advertising. The person who started the thread was upset because she said that if she’d not read that the model had Down’s Syndrome, she never would have known, and that if the company wants to give itself for kudos for using a model with Down’s Syndrome it should at least use a model that looks like he/she has Down’s Syndrome.

The issue for me was that the company felt the need to point out that they use kids with Down Syndrome in our advertising. Like that makes them a better company? Or like it’s a defense against accusations of wrongdoing?

“We’re good people…we use kids with Down’s Syndrome in our advertising!”

Like they deserve a medal for incorporating diversity in their ad campaign?

Do it because it’s the right thing to do, not because it makes you look better.

Democrats, Meet Me At Camera Three

You don’t deserve a medal for giving a woman with disabilities such a prominent place in the DNC.

You do get kudos for Bill Clinton being the first speaker at either convention to mention people with disabilities.

If you really want to honour people like Gabby Giffords, who have the will to live as full a life as possible with disability (and there are many of us), put policies in place that allow us to, and that allow the people who care about us to assist us to. For all disabilities.

Obama, I’ll be watching your speech to see what you have to say about this. I desperately want to believe that you want to help.

(P.S. Miss Giffords, from one person with one-side weakness to another…you look like you’re doing great. Keep up the fine work.)

More on Gabby Giffords: http://en.wikipedia.org/wiki/Gabrielle_Giffords

An interesting blog post on the myth that all people with Down’s Syndrome look the same: http://ellietheurer.blogspot.ca/2011/04/myth-all-people-with-down-syndrome-look.html

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Deficit-Based Assessment

I’m participating in a blog hop over at With a Little Moxie (http://www.withalittlemoxie.com/)deficit-based assessment this week about Early Intervention programs…check it out, because there are some really fantastic posts.

1. Therapy for Our Child with Down Syndrome – Meriah Nichols of With a Little Moxie

http://www.withalittlemoxie.com/2012/05/therapy-for-our-child-with-down.html

2. What happens at a 2 year Early Intervention Evaluation?

http://blog.gretchenmather.com/2012/06/07/what-happens-at-a-2-yr-early-intervention-evaluation/

3. Melanie’s Mania: My son IS the Sport!!

http://melaniesmania.blogspot.ca/2012/06/blog-hop-my-son-is-sport.html

4. Birdie and the Child Find Committee. . . via Riding the Crazy Train: Diary of a Delirious Mom

http://delirious-mom.blogspot.ca/2012/05/birdie-and-child-find-committee.html

5. Life is Beautiful: What is an IFSP?

http://teal915.blogspot.ca/2012/06/what-is-ifsp.html

6. NutsaboutNathan

http://nutsaboutnathan.wordpress.com/

I’ll update this post as more blogs join the blog hop.

A Common Theme: Negative Feelings About Deficit-Based Assessment

I’ve never worked with children with disabilities below the age of 3, so I know very little about Early Intervention teams, the methodologies that they use, or eligibility criteria. Reading these posts was, in that sense, very educational for me.  I’m always curious about how things operate in areas of the sector in which I haven’t worked, even if the information pertains to places in which I haven’t lived or worked.

I kept coming across a theme in the posts that I relate to both professionally and personally, though: experiences of deficit-based assessment. It’s difficult to deal with having your child constantly assessed, and keep hearing from therapists in meetings and in reports about how delayed your child is, especially in relation to other children. This sort of deficit-based assessment for services wears on anyone after a while, and it’s a part of the support systems with which I’ve always had trouble.

Why I Dislike Deficit-Based Assessment

Even though some Ontario funding applications have a space to talk about the individual’s strengths, the bottom line is that supports are allocated by how “disabled” the person is and how well the person’s support system assists with managing the challenges associated with those disabilities. Deficit-based assessment is exactly what it sounds like: Focusing on a person’s deficits to determine their eligibility for services, and not their strengths. In the age groups with which I’ve worked, deficit-based assessment is a relatively direct way of obtaining information, especially as services have started to require forms and reports designed to facilitate easy sharing between agencies or team members.  A question such as, “Does the individual require assistance with bathing?  Yes, No, Reminders only”, with checkboxes, lets the individual give specific information that an agency may require to assist that individual to set and reach goals.

Deficit-Based Assessment Feels…Is “Dehumanizing” The Right Word?

However, when I assisted individuals and families to read reports or to fill out intake forms and applications for funding, I found myself constantly apologizing:

“I’m sorry that this is so intrusive. If we get all this information once, then we never have to go through another intake form.”

“I’m sorry that we’re focussing so much on the negative. We just need to let them know what it is specifically that your child and your family need assistance with and what you’ll use the funding for.”

“You may read some difficult things  in this report, but you have to remember that this is your child at one point in her life. There have been improvements since the last report and there’s no reason to believe that there won’t continue to be improvements if you continue with the plan you discussed with the therapist.”

I think I’m especially sensitive to deficit-based assessment because of my experience of applying for Ontario Disability Support Program income supports after I had my stroke. Although I’ve since had many positive experiences with ODSP since, both as a person receiving supports and as a professional, I cried after my first phone call with them – I told Dad that they made me feel “handicapped”.

It seems to me that applying for supports should be more of a strengths-focused process, but I struggle with how to make it so. I do suggest that people try to keep the focus on the person’s strengths as much as possible, within the framework of how supports are currently allocated and evaluated. For example, at a meeting with therapists, perhaps the parent could suggest that the meeting start by everyone at the table stating what they think the child’s greatest strength is.

How do you think we can keep reminding ourselves and support people of the strengths of the people with disabilities in our lives?

 

 

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Enough from Me About Ricky Gervais…For Now, At Least

If you’ve been watching any of my social media stuff, you know that I’ve been busy doing Ricky Gervaisthe “BADD Tour” – reading and commenting on “Blogging Against Disablism Day” posts (see badge on front page). They’ve given me so much to think about and and so many things on which I want to blog. But today I want to blog on something that’s been lurking in my head since the weekend: how I’m biased, and why it means that I *shouldn’t* blog on some things. Especially Ricky Gervais.

How I Decide on Blog Topics

I do it a number of ways:

  • Sometimes I just blog about personal experience.
  • I have Google alerts set up for “disabilities” and other disability-related terms. Often the alerts bring me news stories or updates on current events.
  • I read blogs by other disability advocates and I subscribe to the ones I really like.
  • I read a few well-respected disability ezines.
  • I keep an eye on my Twitter feed for links to news stories and blogs that look interesting.  I have a lot of great Twitter contacts who post a great deal of useful information.

Most of the time this all works fine. I know that my writing isn’t up the highest journalistic standards, and that sometimes both sides of the story aren’t fully told – but I try to acknowledge that there always are two sides to a story. But I don’t claim to be a journalist. I definitely know that I’m not. I know that my experiences make me too biased to say I’m totally objective with what I write here, and I’m okay with that. Mostly.

It wasn’t until over the weekend, when I started looking for a place to watch “The Undateables” online, and “Derek”, the newest television series by Ricky Gervais, that I realized that even I can only take that so far.

Good Ol’Ricky Gervais

I did another post about Ricky Gervais and “Derek”, based on what I’d heard of it so far. http://www.girlwiththecane.com/derek-noakes/. I came to the conclusion that I might be unfairly biased toward the show on the basis on how Ricky Gervais had handled the “mong” incident on Twitter last year.

When I put the video post on YouTube, I took a beating for, among other things commenting on the show without seeing it. So, I’ve been trying to find a way to view a whole episode of the show online (difficult, as I can’t view Britain’s Channel 4 content from overseas, and there doesn’t appear to be a way view it in North America online that I can find, except for some brief clips). But, as I searched for a way this weekend, I suddenly realized that it wouldn’t mattered. I’ve heard so much about Derek Noakes, the character that Ricky Gervais plays, resembles somebody with an intellectual disability (Comedian Stewart Lee even said that the character resembles someone with Down’s Syndrome) that I’d be looking for the ways in which that’s true. I’d be looking for ways in which the show is mocking people with disabilities. I can’t trust myself to watch in an even remotely objective manner.

Same with “The Undateables”, which I’d also planned to view. I’ve just heard too much about how offensive it is to people with disabilities. I would be looking for it, so I could jump on it.

Maybe I just need to stay away from commenting on the entertainment world and people with disabilities, or at least aspects of it. I will have to think on it. If something comes up with Ricky Gervais again, perhaps Nicky Clark would do a guest post. A fabulous disability advocate, ahe has talked with Ricky Gervais at length about disability issues, and has a great deal of respect for him.

So…no worries, Ricky Gervais. I just can’t sort my feelings out enough about you to be fair, so I’m going to step back for now. But I’m still going to be watching, so you be fair too.

More about “Derek”: http://www.telegraph.co.uk/culture/tvandradio/9200872/Ricky-Gervais-in-Derek-Channel-4-Review.html

More about “The Undateables”: http://www.telegraph.co.uk/culture/tvandradio/9183670/The-Undateables-Channel-4-review.html

 

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Rabbi Boteach and Children With Disabilities…Revisited

So, my friend Geoff (name changed) and I have been having a Facebook debate on the Rabbi Boteach blog on why God allows children to be born with disabilities. Here’s the blog in question:

http://www.huffingtonpost.com/rabbi-shmuley-boteach/why-does-gd-allow-children-to-be-born-with-disabilities_b_1464556.html

Geoff and I often debate American politics. You’d expect that it would come to blows more often than it does, him being a staunch Conservative and me being a bleeding heart Liberal. However, we find that often our beliefs match, more or less, on the basics of many things.  How we’ve arrived at those beliefs is often a different story.Rabbi Boteach

We debated the Rabbi Boteach blog the way we do American politics – calmly and respectfully (well, we debate that way most of the time, anyway). And, as usual, I think each of us made the other do some thinking.

Debating Rabbi Boteach

Geoff said that he couldn’t understand why I had problem with doctors working to cure disabilities. I don’t. I’m not against researchers working to find cures for conditions that cause disabilities or interventions that improve quality of life.  I do have a problem with the blanket assumption in the Rabbi Boteach blog that disability = suffering, and therefore must be eliminated. Certainly some forms of disability are very painful and very isolating and cause a great deal of suffering…but I’m not suffering. My friend Martyn, who has spinal muscular atrophy, uses a wheelchair, and can’t lift much more than a 1-litre bottle is having the time of his life doing humanitarian work in Spain right now. There are plenty of people who have severe hearing impairments and reject the cochlear implant and any improvement it could offer, for various reasons.

http://www.guardian.co.uk/commentisfree/2011/aug/05/deaf-people-cochlear-implants

“The idea that difference must always equal suffering and a yearning to be “normal” is ablist thinking,” I said to Geoff, which he appeared to understand. But he was concerned that I misunderstood the Rabbi’s desire that researchers find cures with a desire to *force* cures on people afflicted with disabilities.

I do think I came away from the Rabbi’s blog with that impression, but I really had to think about why. I think it was his use of the word “purge” when he was talking about Down’s Syndrome.  “Purge” is such an emotionally loaded word for me that that seeing it used in relation to Down’s Syndrome had really set me off, quite frankly. In my world, you purge to get rid of things that disgust you, that you don’t want near you, that you want no part in your life. I’ve never felt that way about Down’s Syndrome or anyone in my life who’s had it. I’d rather “purge” the attitudes that make my friends with Down’s Syndrome or any other disability feel excluded, unsafe, or just generally like second-class citizens in their own towns, states/provinces, and countries.

But Geoff always encourages me to read carefully and monitor whether my emotions are getting the better of me when I’m reading, lest I miss the whole story.  I went back and read the Rabbi Boteach blog again and saw Geoff’s point that Rabbi Boteach was answering the question about children and disabilities from several vantage point: theologian, counselor to parents who’d just found out that their child would be born with Down’s Syndrome, and as a refuter to the argument about children with disabilities being advanced souls in sinless bodies. He’d always came back to the idea that children with disabilities are precious and worthy of life, and he eventually hit the points on which he and I agreed: That children with disabilities are no more or less “divine” than any other children, and that we need to find ways to rally both natural and agency supports around children with disabilities and their families to give them as fulfilling a life as possible.

And for someone that believes those things and is willing to work for them…I can overlook the other stuff that didn’t sit quite right. I apologize to Rabbi Boteach for any of my knee-jerk reactions to his wording that might have caused me to misunderstand the rest of his message.

And thanks, Geoff, for helping me get on track again. :)

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Rabbi Boteach Talks About Children With Disabilities

I generally make it a policy to stay away from religion on this blog. But I’m going to make an exception today to address Rabbi Boteach’s recent blog on the “Huffington Post” website about Judaism’s position on why children are born with intellectual disabilities (or mental disabilities, as he says).

http://www.huffingtonpost.com/rabbi-shmuley-boteach/why-does-gd-allow-children-to-be-born-with-disabilities_b_1464556.html?ref=religion

What I Can and Can’t Address about Rabbi Shmuley Boteach’s Argument

I’m not Jewish, nor do I have an academic background in Judaism. I took Introduction to Judaism in university. It was very interesting. I enjoyed it. However, I’m in no way qualified to argue the theology behind Rabbi Boteach’s argument, nor would I want to. He’s entitled to believe what he wants.

However, I was disturbed by some of the real-world implications of his theological views. This isn’t a new experience for me. Many religions have theological views that, in practice, leave me disturbed. I figure that I can talk about that.

What I Like About Rabbi Boteach

Rabbi Boteach is responding, with his blog, to another Jewish scholar’s argument that children with intellectual disabilities are highly evolved souls. God has made it impossible to sin by putting them in them in their disabled bodies, making them innocent and worthy of our reverence. Rabbi Boteach sees this attitude as “justifying” the “suffering” of the Rabbi Boteachultimate in innocent children, and therefore wrong. Since Judaism works to eliminate suffering, he argues, it’s wrong to pretend that children with disabilities have a “lofty or divine purpose.”

I agree. Children with disabilities face different challenges and may different ways of expressing their gifts than children without disabilities, but there’s nothing about them that makes them any “better” or “worse” than any other child.
Rabbi Boteach and I also agree that a comprehensive system of supports, both natural and agency-based, is vital if people with disabilities are to lead fulfilling lives. Good on him. However…

Rabbi Boteach and I Disagree…

Rabbi Boteach can’t seem to get away from this idea that people with intellectual disabilities are innocent children that will never grow up. I think that this stereotype is particularly damaging for people with intellectual disabilities. They *do* become adults, and we don’t do them any favours when we treat them like they’re children whose innocence makes them unable to handle learning about how the world works. In fact, that can make them much more vulnerable to all kinds of abuse.

There’s also an uncomfortable (for me, at least) slant towards “If it looks different, we should “cure” it” that runs through the whole article. Yes, Down’s Syndrome has its own set of challenges for a child and for the family supporting the child. But many, many people with Down’s Syndrome grow up to live happy, healthy lives – as do people with various disorders on the autism spectrum, cerebral palsy, spina bifida, etcetera. The problem isn’t that these people need a “cure”. It’s assumptions like, “They *must* be suffering, so they must *want* a cure!” that bother me, assumptions about what the people with the conditions feel, and about what the families that support them feel. And the message through the article of children with disabilities having “life more infinitely precious than any explanation” is difficult to reconcile with “But we’d change a huge part of them if we could.”

I don’t doubt Rabbi Boteach’s good intentions with his article. I think that he actually probably treats people with disabilities and their families with a great deal of respect and compassion. I just had a bit of trouble wrapping my head around this bit of writing. If it’s clearer to someone else, and you think that I’ve misinterpreted, please leave me a comment.

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Checking Myself: Ricky Gervais as Derek Noakes

When I saw that disability activist Nicky Clark had interviewed Ricky Gervais about yet another derek noakesdisability-related issue, I just…died a little inside. After the “Mong-gate” incident last year, where Gervais caused controversy by referring to his Twitter followers as “mongs” and pulling faces in his Twitter pics that made him look like a man with Down’s Syndrome, you’d think that he’d just steer clear of everything disability-related. However, his latest television project. featuring Ricky Gervais as Derek Noakes, has got the lines buzzing again.

The Goods on Derek Noakes

“The Independent” describes Derek Noakes (whose first name is also the title of the show) as “a kindly but simple helper at a nursing home, who appears to have learning difficulties.” Comedian Stewart Lee has described Derek Noakes as having “some superficial similarities to Down’s syndrome.” It’s difficult to tell the extent to which Gervais plays Derek Noakes as a person with disabilities from the clips currently available on the Internet (the show doesn’t debut on Britain’s Channel 4 until Thursday). Gervais insists that he’s never seen Derek Noakes as a person with disabilities, or he would have hired someone with disabilities to play him.

In the Words of Some “South Park” Character: “I Call Shenangigans!”

(Or, “I think that’s bullshit”, to those not familiar with South Park.) At least…I did at first. In light of Mong-gate, and the fact that Gervais’ last show was about someone with dwarfism (drawing a lot of publicity, both positive and negative, for its treatment of people with dwarfism), he’s just been getting too much attention for his views on disability and his feelings about offending people with his comedy about people with disabilities (all his comedy in general, really.) Since Gervais seems to be of the “even negative press is good press” school of public relations, of course it doesn’t matter that he’s received as much criticism as he has support. It’s all attention, and it’s all on him.

I was disgusted with this latest incarnation of it, quite frankly. As is my right, Mr. Gervais, by the way. You have the right to free speech. I have the right to be offended by what you have to say, no matter how much you insist that it’s wrong that I am.

However.

Ricky’s comment to Nicky Clark about how if he said that Derek Noakes wasn’t disabled, he wasn’t, and then a subsequent comment about Sheldon from “The Big Bang Theory” got me thinking.

I’ve talked before about how my friends in social services and I are convinced that the Sheldon Cooper character in CBS’ hit sitcom “The Big Bang Theory” has Asperger’s syndrome, although it’s never been acknowledged by anyone involved with the show. If someone involved with the show was to say, “Sheldon doesn’t have Aspeger’s. He’s just…quirky,” I suppose I’d feel that I have no choice but to accept that. I’ve never felt that his character has been particularly insulting to people with Asperger’s because you could interpret him as having it. I actually quite enjoy the show, and the Sheldon character. It’s funny that I’m willing to give the producers of “The Big Bang Theory” more latitude than I am Ricky Gervais with Derek Noakes and his new show. I may have to examine how much of this is really about Derek Noakes and how much of it is residual annoyance about “Mong-gate”, which really did make me angry.

More about “Mong-gate”: http://www.girlwiththecane.com/ricky-gervais/ Nicky Clark’s interview with Gervais: http://nickyclark.blogspot.ca/2012/04/ricky-gervais-talks-about-derek-karl.html

“The Independent” article:  http://www.independent.co.uk/arts-entertainment/comedy/features/mock-the-disabled-me-ricky-gervais-on-how-he-has-been-misunderstood-7621909.html

Stewart Lee’s commentary:  http://www.guardian.co.uk/commentisfree/2011/nov/13/stewart-lee-comedy-offensive-gervais

More on “The Big Bang Theory”:  http://the-big-bang-theory.com/

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Britain’s “The Undateables” Explores Disability and Dating

The Undateables  - I didn’t know how to react. I’ve always found British television to be very edgy

The Undateablesand imbued with a humour that American and Canadian television just can’t seem to replicate (for example, the British version of The Office, which predated the American version and is howlingly funny – and I’m a fan of the American version as well). Is naming a reality television show about people with disabilities trying to find love another example of this edginess? Or is it just a poor, poor choice of title for a show that’s a step backward for people with disabilities?

Who are The Undateables?

I couldn’t access clips from the episode that has aired already, but I read the descriptions of the three episodes that air this season. The first episode follows three people on at least one date:

  • Richard is an amateur radio enthusiast with Asperger’s syndrome. He will only date women who live within a five-mile radius of his home, and won’t eat on a date.
  • Luke, a stand-up comedian with Tourette’s syndrome, is scared to date for fear that his disorder might cause him to call his date an insulting name.
  • Penny has brittle bone disease. A trainee teacher who has never dated, she is 3’4″ tall. Her  ideal man is 6’0″.

Future episodes of The Undateables include an amateur poet with learning disabilities, a skateboarder with facial disfigurements, and a student with Down’s Syndrome.

Reactions to The Undateables

Many people, both with and without disabilities, found the billboard campaign that Channel 4 used to advertise The Undateables very insulting. The title of the show, and the implication that people with disabilities are “undateable” seemed a huge issue among the people that left comments on Channel 4′s website about the show’s first episode. However, most people seemed willing to at least watch it, and that’s where the viewership became more divided. While the majority of commenters seemed to feel that The Undateables could be very useful in breaking down stereotypes about people with disabilities and dating, others argued that the show was humiliating for and exploitative of those involved , more focused on getting ratings through controversy than educating people about disabilities, and naive in its presentation of the issues that people with disabilities face on a daily basis.

Even the press seems divided. Samir Raheem of “The Guardian” used the word “ridicule” when talking about how The Undateables treated its participants in the first episode. From the way he described the episode, it sounds like I’d agree. The show apparently referred to the participants as “extraordinary singletons” and the dates with whom they were paired as “extraordinary people”; “In the world of matchmaking, people with disabilities can be a hard sell,” Raheem reports the voice-over saying; finally, the show seemed to make it a point to pair the participants with other daters with disabilities (as if we can only date “within group”), or with people that would set the participant up for failure, such as the dater that found Luke’s Tourette’s funny and was disappointed when he didn’t call her a name. For Luke, who believed that the Tourette’s wasn’t necessarily the problem, but more his extreme shyness around women, that’s only going to cause a scenario that practically ensures that Tourette’s would become an issue.  Read Raheem’s entire review here of the first episode of The Undateables here:

http://www.telegraph.co.uk/culture/tvandradio/9183670/The-Undateables-Channel-4-review.html

Lucy Mangan of “The Guardian”, however, felt that The Undateables was “kindly, thoughtful, and full of inadvertent comedy”, and not at all exploitative. She felt that leaving in bits like Richard putting on far too much aftershave and then  explaining that “when you’re going out on a date, you’ve got to be sure,” was less patronizing than leaving them out. I disagree. It’s one thing to have a camera follow you around on a date. It’s quite another to have people point out grooming faux pas that, because of your disability, you might not realize you might be making, and include it in a matchmaking program. It *is* patronizing, and the role of people with disabilities in our society is not to make us smile nostalgically and say, “Wow, I did that once…poor bastard.”

Which leads me up to things being inadvertently funny. I know from working with people with intellectual disabilities that they sometimes do things and have conversations where they don’t mean to be funny, but are. It does happen. But the key there is, “they don’t mean to be funny”. So you don’t laugh. Because no one likes to be laughed at because they misunderstood how to say or do something.  It’s not “kindly” or “thoughtful”.

Read Lucy Mangan’s review of the first episode of The Undateables here: http://www.guardian.co.uk/tv-and-radio/2012/apr/03/the-undateables-horizon-tv-review?newsfeed=true

The Undateables airs twice more in the UK. I’m hoping that it doesn’t have a second season, let alone an American version.

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Today is World Down’s Syndrome Day

Who knew that World Down’s Syndrome Day could leave me feeling so torn?

On the one hand, I totally recognize the need for a day to raise awareness around Down’s Syndrome. People

World Down’s Syndrome Day

make a lot of assumptions about individuals with Down’s Syndrome and their characteristics, what’ they’re capable of learning, what sort of contribution they’ll be able to make to society…heck, we’re still battling parts of the medical community on whether babies with Down’s Syndrome are “worthy” of life. http://www.girlwiththecane.com/downs-syndrome/

And I do realize that I’ve been using International Developmental Disabilities Month as an awareness tool, as many people have. I don’t think that I believed that there’s anything inherently wrong with awareness “days”, “weeks”, and “months”.

Until this morning, when I intended to write a much shorter blog about this, and I wrote this: “Check out the website to see if any events are happening in your area. If there aren’t any events in your area, perhaps you have an idea of your own of how you could celebrate? Or of how you could move us closer to being a society that recognizes the potential and achievements of all people with disabilities, everyday? Just a thought.”

Celebrating World Down’s Syndrome Day Every Day

I don’t mean that people without disabilities go around with a huge pat  on the back everyday for the people in the lives with disabilities. I just mean that if somone with Down’s Syndrome impresses you with what they do, you don’t have to wait until World Down’s Syndrome Day to tell them, or to tell someone else. If you’re curious about what Down’s Syndrome is and how it affects someone in your life, you don’t have to wait until a World Down’s Syndrome Day event to get some information about it.

We should find out about the people around us and let them know what impresses us about them throughout the year (whether they have disabilities or not). It makes people feel good…and that makes us feel good…doesn’t it?

All that being said, it *is* World Down’s Syndrome Day. Visit the website and see if there’s anything happening in your area.

http://www.worlddownsyndromeday.org/

 

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