Tag Archives | medical model of disability

Update on Amelia Rivera

Amelia RiveraI’ve commented before on the fight that Joe and Chrissy Rivera have waged with the Children’s Hospital of Philadelphia (CHOP) to get their three-year-old daughter, Amelia Rivera, a kidney transplant. In January, Chrissy blogged that syndrome that a CHOP doctor had indicated to the family that  Amelia’s Wolf-Hirschhorn diagnosis created concerns quality of life concerns, given that she’s “mentally retarded”, that made her ineligible for transplant. The Riveras did not want her placed on the donor transplant list, as Chrissy was willing to donate a kidney. They were asking for the hospital to do the surgery.

Wolf-Hirschhorn syndrome is a chromosomal condition, It causes physical and intellectual disability, as well as a variety of severe health problems.

The hospital denied the allegations that they discriminate on the basis of intellectual disability, as Amelia Rivera’s case implied. However, once the story hit the national news, people quickly decided that something had to be done. An online petition demanding that the hospital do Amelia Rivera’s transplant surgery got over 50,000 signatures.

Good News for Amelia Rivera

According to Disability Scoop (http://www.disabilityscoop.com/2012/08/09/after-girl-transplant/16208/), it was the petition that prompted CHOP to re-evaluate Amelia Rivera’s case. She’s been cleared for the transplant surgery, with her mother as the donor.

Good for CHOP for Coming Around, But…

I don’t know about the rest of you, but I find the idea of a medical system where people are deemed eligible or ineligible for transplant surgeries based on the medical professional’s assessment of potential quality of life profoundly disturbing. I’ve already heard too many stories about doctors (and other professionals who use the medical model of disability) who would rob people with intellectual disabilities of fundamental rights (and this has, at times, included the right to life) because of quality of life/”contribution to society” issues.

It’s a way of viewing people that not only makes major assumptions about the person’s capacity to have a fulfilling life (assumptions that are inappropriate in the extreme for a three-year-old who almost two decades of development ahead of her), but of the capacity of the people around her to assist her to develop a life that she finds meaningful. I’ve worked almost exclusively with young adults and adults with intellectual disabilities in my career, and been thrilled with how far some of them come with setting and meeting life goals in a very short time with good support from formal and informal networks. To say that “This three-year-old isn’t going to have a good quality of life because she’s mentally retarded” and then deny a treatment on the basis of that is criminal to me.

Yes, good for CHOP for coming around and seeing that they should be doing this transplant surgery for Amelia Rivera. However, it saddens me that they had to come around at all. For anyone who doesn’t think that people with disabilities don’t face hurdles in society, ask yourself if any doctor, ever, would have said about a three-year-old without a disability, “Well, I don’t think that this child will have a good quality life, therefore I think she’s ineligible for transplant.”

Three years old.

I submit that it wouldn’t happen. What do you think?

Thank you to everyone who signed the petition and fought for Amelia Rivera.

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Changes to Laws in Canada Regarding Physician-Assisted Suicide

So, I missed a major Canadian story in June, about changes in the laws physician-assisted suicideregarding physician-assisted suicide. I apologize.  What can I say? I watch too much American news!

The laws regarding physician-assisted suicide in Canada got a major shake-up in June. The British Columbia Supreme Court ruled that doctors be exempt from criminal charges if they assist a person who is terminally ill and who has requested to die to commit suicide.  The federal government will be appealing the ruling, as it partially lifts the ban on physician-lifted suicide.

The BC Supreme Court then immediately made an exemption to the new ruling for Gloria Taylor, one of parties who sought the ruling. Taylor and her doctor believe that the ban on physician-assisted suicide is unconstitutional in that prevents people who don’t have the means or ability to do so from taking their own lives if they so choose.  The BC Supreme Court exempted her from the new ruling from a year in order to give the federal government a chance to rewrite the physician-assisted suicide laws, but advocates still find the move confusing (as do I).

But, putting that confusion aside for a moment to consider how I feel about the ruling in general…I think that the federal government is right to appeal. This is nothing to be jumped into.

On Suicide

Emotional pain has made me suicidal at several points in my life. I’ve never been to the point where I’ve had a plan or a date in mind, but there have definitely been times when it’s seemed like a good alternative to dealing with whatever I’ve been dealing with. I’ve not felt like that for a long time now, which is something for which I’m really grateful.

I don’t want to deprive anyone of the liberty to do what they want with their own body, but I’m not pro-suicide by any means. I once called the police on a friend in another province who left something that sounded like a suicide note in her LiveJournal. I didn’t have any contact information for her family or friends, I felt like time was critical, so I used the resources that I had available to me. I did this not because I wanted to violate her right to kill herself if she chose to, but because I was scared that in her mental state (which had been unstable for several weeks) she didn’t understand the consequences of her actions.

Which is my objection to the ruling in general: Even though it applies only to people with terminal illness, I’d want to be sure that there’s the medical infrastructure in place to ensure that people requesting physician-assisted suicide understand exactly what they’re requesting and that there isn’t a concurrent diagnosis like depression influencing the request. I think that countries that allow physician-assisted suicide currently screen for these things.

If this concern were properly addressed, I don’t think that I’d have a problem with this ruling. But, looking at the ruling from a disability standpoint, I think it’s very problematic.

Permitting Physician-Assisted Suicide – Proceed with Extreme Caution, for the Sake of People with Disabilities

I’m uncomfortable living in a society where physician-assisted suicide is legal and the following attitudes toward people with disabilities are still so widespread:

  • We’re a drain on public resources
  • We make a small contribution to society, if any
  • We’re ultimately defined by what we can’t do
  • Some of us are so disabled that we shouldn’t be allowed to live, let alone participate in the community
  • It’s okay for other people to make decisions about whether or not we live or die

The ruling talks about terminal illness and the person with the illness making the request to die. But there are plenty of people out there who look at disability as an illness, and the fact that severe disability often does not get any less severe as a terminal condition. And there are plenty of people willing to by-pass a communication process with a person with a severe disability if that process doesn’t serve them.

Look at Annette Corriveau, who has been fighting for the right to end the lives of her two adult children with severe disabilities. who cannot verbally communicate their wishes. She assumes that they want to die, because she would want to die if she had their disabilities. Is this ruling a “slippery slope” for the Annette Coriveaus of the world? Or the doctors who don’t believe that infants with Down’s Syndrome should be kept alive using extraordinary measures?

Sadly, one of the things that makes people with disabilities vulnerable in society in general is the tendency to view them using the “medical model” – disability is a tragedy, and people with disabilities need to be cured. For people that look at disability using the medical model (and they’re not necessarily just people in the medical profession), medical science’s inability to cure people with disabilities and have them lead what they consider “fulfilling lives” as “productive members of society” is extremely problematic. My concern about lifting the ban on physician-assisted suicide when the model model of disability is so much a part of our worldview is that people who can’t speak up for themselves, like Annette Corriveau’s children, may start to find themselves in danger.

Other countries have made physician-assisted suicide work. But, in order to protect our most vulnerable, we’d have to be very, very careful about implementing it in Canada.

More on this story: http://thechronicleherald.ca/canada/117095-assisted-suicide-ruling-appealed

More on Annette Corriveau: http://www.globalnews.ca/taking+mercy/6442597182/story.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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Amelia Rivera Update

Children’s Hospital of Philadelphia has apologized to Amelia Rivera’s family for how discussionsamelia rivera about a potential kidney transplant for the 3-year-old were conducted.

http://www.disabilityscoop.com/2012/02/16/hospital-sorry/15003/

Children’s Hospital of Philadelphia Denies that Amelia Rivera Was Declared Ineligible for Transplant Based on Her Intellectual Disability

Amelia has Wolf-Hirschhorn Syndrome, a rare genetic disorder characterized by severe physical health issues and intellectual disability.  At a meeting with a surgeon and a social worker at the Children’s Hospital of Philadelphia, parents Chrissy and Joe Rivera were told that Amelia would not be eligible for a life-prolonging kidney transplant because she is “mentally retarded”.

Chrissy blogged about the incident in a Wolf-Hirchhorn Syndrome internet support community, attracting media attention and sparking the creation of an online petition to get Children’s Hospital of Philadelphia to reconsider its position.

The hospital has agreed to reevaluate its decision regarding Amelia’s eligibility for transplant, and continues to deny that it discriminates on the basis of intellectual disability.

For the full story and commentary on the Rivera case, please read: http://www.girlwiththecane.com/amelia-rivera/

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Lost a Limb…Regrow a Limb?

Hello again!  I hope that everyone had a great Christmas and that you’re all looking forward to New Year’s!lost a limb

I spent Christmas with my family, at my sister’s house. I got lots of opportunities to play with my little niece and work on my techniques for making her smile and laugh, holding her the way she likes (so that she can see everyone), and picking her up. I’m very aware that there are many childcare that skills I that I haven’t yet mastered, but with each visit with her I feel more and more confident about my ability to look after her using one arm.

I think that’s why I’ve been a bit grumpy about a commercial that I’ve been seeing on television recently. It’s one of those commercials where people with various ailments and their doctors talk about how “We *will* find a cure for ____” (cancer, diabetes, etc.), and of course I know that these research efforts are very important. Besides my AVM (which is not supposed to be hereditary, but I’ve stories that suggest that they do seem to run in families), women on my mother’s side tend to die young from cancer, and there’s stroke and diabetes on my father’s side…it’s not exactly comforting.

Lost a Limb? We Can Cure You!

The part of the commercial that annoys me is when the young doctor comes on and says, “We *will* find a way to regrow limbs.”  Granted, I haven’t lost a limb, but I pretty much live one-handed, and I don’t feel like I miss out on a whole lot. I actually wrote about this in article right before Christmas, about how I’d once talked with a woman online who couldn’t understand why her blind date hadn’t told her before their date that he was missing a hand. I suggested that perhaps he was fine with the fact that he was missing a hand and didn’t see any need to tell her. But clearly she’d had a problem with it.

When I hear things like, “We *will* find a way to regrow limbs,” I feel the same way. I feel like it’s society saying to people who have lost a limb, “We have a problem with you being like this, so we are going to cure you,” when many of these people may not a problem at all with how they are living.  Society has the problem with the disability, not the person living with the disability.

Lost a Limb: Accessibility Woes

Not that navigating society without a limb isn’t difficult, particularly if one has to use a wheelchair. However, much of that difficulty with being in a wheelchair happens because accessibility is so slowly becoming a priority.  I can speak from experience on this one…it’s not so miserable being in a wheelchair when buildings, spaces and transportation are accessible. Again, it’s been society’s problem with people with disabilities that’s made having disabilities difficult. Thank goodness that’s changing.  It will be interesting to see whether medical science can regrow a limb by the time that all Ontario buildings have to be physically accessible (2025).

Lost a Limb, But Still OK!

I’m fine with having little function in my left arm and hand. There are some things that I obviously can’t do, but I manage. I went through a process of becoming fine with who I am with those impairments, as I imagine I would if I lost a limb.

Perhaps some people would welcome medical interventions that took away their disabilities. I’m not saying I wouldn’t try an intervention myself if it could bring back a lot of function in my arm and hand. But the blanket assumption that all people who have lost a limb want/need to be “cured” bothers me. It suggests that they’re not good enough, or can’t have productive, fulfilled lives,  the way they are right now.

And that’s simply not true.

 

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Protecting Babies with Down’s Syndrome

Looking at blogs the other day, I found one that talked about a shocking issue that I’d never heard of: genetic discrimination relating to babies with Down’s Syndrome. (Be warned; the video is heartbreaking).

http://www.thepoppiesblog.co.uk/2011/07/you-can-put-her-into-care-if-you-dont.html

“The Poppies” is a British blog, so I went searching to see if I could find research about similar medical attitudes in North America. I think that really I was

intellectual disabilities

Father and Son

shocked and wanted some research from a social scientist about whether *our* doctors actually felt it was appropriate to automatically put DNRs on babies with Down’s Syndrome with health problems, or not tell parents of babies with Down’s Syndrome about treatments that could help with these problems, or refuse to do life-saving surgeries on babies with Down’s Syndrome.

Just Bringing up Eugenics is Distasteful

My first find was this treatise presenting arguments for and against eugenics and Down’s Syndrome. It appears to be serious.  I know that it’s  arguing *for* the the fact that we should let people with Down’s Syndrome live *rolls eyes*.  However, the fact that the medical community needs to even have the discussion at all made me feel sick to my stomach as I read this “proclamation” that it’s indeed okay to keep people with Down’s Syndrome around.

http://www.messengers2.com/articles/disabilities/eugenics_and_down_syndrome.htm

Genetic Discrimination in France

I pressed on. I found a study from France that indicated that “in some instances parents or professionals feel justified on one hand in not providing DS children with the necessary care and on the other hand to transfer their responsibilities to the public health system.”  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1051632/pdf/jmedgene00275-0015.pdf

High Abortion Rates for Fetuses with Down’s Syndrome in the US and Britain

And, finally, I found a fact sheet (with a pro-life bias) expressing concern about very high abortion rates for fetuses diagnosed prenatally with Down’s Syndrome in both the US and Britain, and about what doctors said and did that made the women decide to abort or carry the pregnancy to term. Apparently many women feel pressured by doctors to end the pregnancy after a prenatal Down’s Syndrome diagnosis.

http://www.physiciansforlife.org/content/view/1301/26/

Attitudes Toward Infants with Down’s Syndrome Need to Change

Like I said – I had no idea this was happening. I know it’s not happening with all doctors. When my best friend was offered the special testing to detect Down’s Syndrome in her kids, her doctor said, “If it doesn’t make a difference to you, then there’s no need to do it,” so  they didn’t. I’ve been to plenty of doctors with people with a variety of disabilities, all of whom were treated with respect and compassion (and I watch very carefully).

But it seems that genetic discrimination *is* happening to babies with Down’s Syndrome, and that needs to be changed. I thought that we were over the idea of evaluating people on the basis of whether or not it looked like they were going to live a “productive” life or be “burdens” to people because of their health conditions…and I never knew that doctors had some sort of crystal ball, that they could determine what a person’s future was going to be, whether or not they could make a contribution to the world, or whose lives they could touch in a positive way.

I’m still kind of processing this, and figuring out what I’d like to with it. I’d like to hear your comments.

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I’m Not Sick

Looking around the disabilities blogosphere yesterday, I found a number of entries about the idea that disabilities are an illness and that people with disabilities need (or want) to be “cured”.

Disability: Illness to be “Cured”?

I’m sure that some people have disabilities with which that they’d rather not deal . I know that when I’m trying to open a jar or move something heavy, being able to use two hands would be useful. And that little bit of inconvenience pales in comparison to that of someone who needs constant support from others to survive, and is therefore dependent on others’ schedules and routines.

And I know that a lot of research goes into trying to make sure that people don’t have the type of stroke that I have. But, now that I’ve had that stroke, do people look at me and consider me in need of a “cure”?

I once accompanied a gentleman with Down’s Syndrome to an appointment. While we were in the waiting room, someone who knew his family came over to say hello. When the gentleman got up to use the use the washroom, the woman leaned over to me and whispered, “He’s a lovely man. Such a shame about the Down’s Syndrome.”

“I don’t know,” I said. “I’ve known him for a couple of years now, and he’s always struck me as enjoying his life.”

“Well…you know what I mean,” she said.

No, I don’t, I thought.

Today…

I took a break from this yesterday because I was having trouble getting across what I wanted to say. After a day of thinking about it, I think I’m a little closer.

“Disability” isn’t an illness; it’s a measure of a level of functioning. My left arm is “disabled” compared to my right one, because my brain has trouble recognizing that my left arm is there.  Someday there may be a cure for *that*, if research into strokes continues to be made a priority.

But “disability” only exists as long as we continue to insist that there’s only one standard of “ability” against which we must judge everything.  And insisting on one standard of “ability” is like insisting on one definition of “normal”: it doesn’t exist. Human beings simply come in too dazzling an array of…everything…to insist that “normal”, “ability” (and “abled”, by extension) have only one definition.

Not Sick

I don’t ever want to be put in a position where I have to explain to any person that I support that his/her disability is to be “cured” or that I am there to do it. I simply want my work about to be about assisting people with disabilities to access the resources that they need to be the best that they can be in a life that makes them happy.

I don’t know how widespread the conception that “disability=illness” is. If it *is* widespread, then I’m not even sure how much I like the word “disability” anymore. I think maybe we need a better word.

Because I don’t need a “cure”. I  had a stroke and now my body moves differently than it used to…but I am not sick.

Check out these links…these ladies wrote brilliant posts on this subject:

http://www.ruthmadison.com/the-trouble-with-cure/

http://abnormaldiversity.blogspot.com/2011/07/perception-and-grief.html (this one is not on “cure” specifically, but Ettina’s thoughs about how our perceptions affect our attitudes really made me think).

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