Tag Archives | discrimination

I Stand With Henry

By on September 15, 2012 in Abilism/Discrimination, Activism, Autism, Developmental Disability, Education Issues, General Disability, Very Cool People

I’m back to the blog this weekend to talk about a self-advocate that I found out about this week, and to ask you to take five I stand with Henryminutes out of your schedule to let him know, “I stand with Henry!”

Self-Advocacy Rocks

I used to work with teens with intellectual disabilities. Some of them weren’t even aware when they started with my agency that they had any rights. A few from that same group left my program see me on the street now and are excited to tell me about the latest way in which they stood up for their rights.

It’s an amazing privilege, to work with someone on becoming a good self-advocate…to examine with them what that means, and to see it start to sink in. Seeing the person start to apply the skills in their lives – well, that’s a real “this is why I do this work” moment.

It takes courage to stand up for your rights, and practice – it’s a skill. I was always proud of the teens I worked with for trying, no matter how it turned it. I’ve had to do it myself as a person with disabilities, and it can be pretty daunting, even when you’re got support around you. I’m sure that I don’t have to tell many of you this.

Keeping all this is mind, you can understand why I stand with Henry, and why I think you should too.

I Stand With Henry…Do You?

Henry has the makings of an amazing disability self-advocate. A young man with autism, he’s non-verbal and uses a communication device. He wants you to know something:

Personally, I don’t see why he can’t go to his neighbourhood school. I stand with Henry.

If you do too, please show your support by leaving a comment on his video at YouTube, or on the blog that he wrote:

http://ollibean.com/2012/08/23/my-civil-rights/

There’s also a Facebook page:

https://www.facebook.com/IStandWithHenry

It takes a lot to put yourself out there like this. Let’s let Henry know that there are people who have heard his message and that agree that inclusion is the best way to go!

Have a great weekend…

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AWA – A Shocking Story of Ableism by a Hospital

By on September 14, 2012 in Abilism/Discrimination, Annette Corriveau, Attitudes Toward Disability, Down's Syndrome, End-of-Life Issues, General Disability, General Issues, Intellectual Disability, Multiple Disabilities, Physical Disability

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

By on September 12, 2012 in Abilism/Discrimination, Airline Discrimination, Attitudes Toward Disability, Conditions, Down's Syndrome, General Disability, General Issues, Intellectual Disability, Physical Disability, Running Stories, Transportation Issues

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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Protests Happening at US Goodwill Locations This Weekend

By on August 22, 2012 in Abilism/Discrimination, Activism, Employment Issues, General Disability, General Issues, Goodwill Pay Discrimination Boycott/Protests, Goodwill Pay Discrimination Scandal, Sheltered Workshops

goodwilllIf you’re looking for something to do this weekend and maybe looking for a worthy cause that needs your time and energy, consider taking a walk down to your local Goodwill location on Saturday at around 10:30 am. Perhaps it will be one of the 80 at which the National Federation of the Blind (NFB), the Autism Self-Advocacy Network (ASAN), and the disability advocacy group ADAPT have organized one of their informational protests regarding Goodwill’s compensation policy for people with disabilities.

People With Disabilities Working for as Low as $0.22/Hour at Some Goodwill Locations

Regular readers may remember that earlier in the summer I wrote a post about this when it first became public knowledge. I thought the lowest that people were being paid was $1.44 an hour. As you can see, apparently it’s been much lower in some places (http://www.disabilityscoop.com/2012/08/21/protests-target-goodwill/16285/).  The NFB and other American disability organizations called for a boycott of Goodwill in America until they stopped the (sadly, legal) practice of giving locations discretion to pay workers with disabilities substantially below minimum wage.  64 of the 165 Goodwill-affiliated agencies in the US engage in this practice.

Goodwill argues that the certificate that allows them to pay people with disabilities below minimum wage is a “tool” that facilitates job creation for people that would otherwise find it very difficult to find work.

I don’t know what’s scariest about that “justification”: that Goodwill actually believes that paying anyone $0.22 an hour to do anything is a “job”, that they have the guts to put themselves out there as believing they do…or that there are people in this country, with or without disabilities, that need employment that badly or put so little value on the work that they they can do that they’d actually do work for that little money. It’s a whole lot of wrong, on a whole lot of levels.

Breaking It Down a Little Further

It’s difficult to understand how Goodwill doesn’t see how this creates more issues than it solves.

  • It’s exploitative. No two ways about it.
  • It does nothing to assist people with disabilities who are living in poverty to better their financial situation.
  • It sets a poor example for the rest of the business community: “Goodwill does it, and we all know that they do good work for everyone, so it must be okay.”
  • It sets a poor example for the community, the country, and the world. Do we really need any more examples of people with disabilities being devalued?

I wrote more about this at:  http://www.girlwiththecane.com/goodwill-industries/

The Goodwill Protests

As I said, the informational protests are happening at Goodwill locations across the country this Saturday, August 25, 11 am – 1 pm local time. You can keep tabs on what’s happening by following @NFB_Voice on Twitter. Also check out this article for anything you’d ever want to know about the protests (including how to organize one in your area if one isn’t going on, complete with promotional materials) and the Goodwill controversy: https://www.nfb.org/fair-wages#Protest

Spread the word and try to get to a protest yourself if you can!

 

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Paul Corby Denied Heart Transplant; Autism Cited as One of Factors

By on August 15, 2012 in Abilism/Discrimination, Attitudes Toward Disability, Autism, Conditions, Developmental Disability, General Disability, General Issues, Medical Issues, Mental Condition, Pervasive Developmental Disorder

Philadelphia hospitals, I’m now caught up on what’s happening with Paul Paul CorbyCorby. Congratulations, you’re the first in the blog to hear this in Paragraph One of an entry: Meet me at camera three.

Because, seriously, what are you thinking?

Paul Corby’s Story

Let’s bring everyone else in on this, shall we?

Paul Corby is 23 years old and happens to have Pervasive Developmental Disorder Not Otherwise Specified, which is an autism spectrum disorder. He also needs a heart transplant. The doctors at the Hospital of the University of Pennsylvania don’t think he’s a good candidate, “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”

http://www.disabilityscoop.com/2012/08/14/claim-heart-transplant-autism/16251/

I admit that while I’m very grateful for the successful resolution of Amelia Rivera’s case at the Children’s Hospital of Philadelphia, I’m hotter under the collar about this than I used to be. I’m getting really tired of reading about people with disabilities being discriminated against by the medical community because of outdated ways of viewing them and their potential.

Assumption of Bad Outcome

Penn Hospital, this part’s for you in particular.

I see here an assumption that because Paul Corby has an autism diagnosis, there’s automatically such a large chance of a bad outcome that a heart is better off with someone else.

I know that donated organs are scarce, and that a lot of consideration has to go into especially who gets a heart. Yes, there could be aspects of stereotypical behaviour associated with autism that could make the recovery process associated with a transplant difficult. However, I saw a heck of a lot of people when I was in stroke rehabilitation and recovering that had a lot of difficulty with the process, and it wasn’t because of any diagnosis that I knew of…they were just people having a difficult time with recovery! Regular readers know that I went through a few difficult periods myself, that certainly weren’t anticipated and required some extra support from staff while I worked out whatever was happening…but the support got put in place, and the issues got worked out.  You can’t assume that a diagnosis automatically means that a person can’t deal with transplant issues (or that a lack of one automatically means that they’ll be able to, for that matter).

This attitude of “Hands off our heart because all these things could happen because you’re, you know, autistic” is just blatantly discriminatory, offensive to people with disabilities everywhere, and suggests that you don’t have much confidence in the team that would be offering Paul Corby care afterward. Are you so frightened of the word “autism” that you doubt your ability to work with this young man, who is obviously creative, accomplished and, most importantly seems perfectly capable of expressing what he needs and wants? And who seems to have a loving family committed to assisting him to meet the challenges in his life? It seems to me that your support teams would have had to deal with individuals that present many more barriers to positive outcomes after serious medical procedures.

Running Down the Case

Here’s another article about Paul Corby’s struggle:

http://blogs.babble.com/strollerderby/2012/08/07/family-young-man-denied-heart-transplant-because-hes-autistic/

Taking the two articles together, we’ve got this support for him:

  • 2 doctors that suggests that “autism”, as an exclusionary term, is too broad.
  • Other hospitals that are willing to give a second opinion.
  • Paul Corby has an extensive support network.
  • Paul Corby isn’t a smoker or a drinker.

The Point

Penn Hospital. Really?

I’m not asking you to give him the transplant. I understand that you may have legitimate reasons for denying him the transplant that I don’t understand.

But, for God’s sake, take the autism diagnosis out of it. Do the right thing.

Get it together, Philadelphia hospitals.

Petition: “Help My Autistic Son Get a Life-Saving Heart Transplant” - http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant

 

 

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Lack of Accessible Taxis in New York City is Okay, According to Appeals Court and Bloomberg

By on June 30, 2012 in Uncategorized

There are only 231 accessible taxis in New York City. The appeals court ruled on Thursday that,  accessible taxis in New York City in a city where there are over 13 000 taxis, this is okay, as long as a person with who wants to drive a cab isn’t discriminated against on the basis on disability. The appeals court ruling overturns an earlier ruling by Judge George Daniels saying that the low number of accessible taxis in New York City violated the Americans with Disabilities Act.

http://www.huffingtonpost.com/2012/06/29/nyc-taxis-dont-have-to-accomodate-disable-appeals-court_n_1637026.html

Michael Bloomberg Says There’s No Need For More Accessible Taxis in New York City, So It Must Be True

New York City Mayor Michael Bloomberg is pleased with the appeals court ruling. In a quote in the Huffington post, he demonstrates the lack of insight into the needs of New York City citizens and visitors in wheelchairs that’s become sadly characteristic of him since this story broke last year: “”This ruling is consistent with common sense and the practical needs of both the taxi industry and the disabled, and we will continue our efforts to assist disabled riders,”

Here’s the comment that I left on the Huffington Post story last night (with the punctuation errors corrected; it was late):

“If Bloomberg is content with knowing with knowing that by limiting access to convenient, reliable transportation for people with physical disabilities in his city, he also limits their access to employment and volunteer opportunities, as well as opportunities to put their money back into the city’s economy, I guess there’s no talking him out of it. Lord knows people have tried.

I hope he’s also considered that tourists to New York with disabilities are also affected by how difficult it is to get a cab. If I were planning a leisure trip to an American city and I was still using a wheelchair, or with someone in a wheelchair, this news would definitely make me consider going elsewhere.

What else are the people of New York with physical disabilities to take from this except that their mayor doesn’t care about their transportation needs or value the contribution that they make to city life? Congrats on spitting in your constituents’ faces, Mr. Bloomberg.”

More information on the new ruling on accessible taxis in New York City:

http://online.wsj.com/article/SB10001424052702304058404577495052575426594.html?mod=googlenews_wsj

Other posts that I’ve made about accessible taxis in New York City:

http://www.girlwiththecane.com/attn-editor-of-the-new-york-post-re-americans-with-disabilities-act-editoral/

http://www.girlwiththecane.com/accessible-taxis-in-new-york-city/

http://www.girlwiththecane.com/accessible-taxis/

http://www.girlwiththecane.com/michael-bloomberg-accessible-cabs/

http://www.girlwiththecane.com/accessible_cabs/

 

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Goodwill Industries…Champion for the Disabled Worker! *rolls eyes*

By on June 18, 2012 in Uncategorized

The National Federation of the Blind in the United States has called for people to boycott goodwill industriesGoodwill Industries International. This story actually broke about ten days ago, so many of you likely already know about it.

The Issues Behind the Call to Boycott Goodwill Industries

The issue around the call to boycott Goodwill Industries is that the National Federation of the Blind had discovered that Goodwill had been paying some of its workers with disabilities significantly below minimum wage – as low as $1.44 an hour. Apparently it’s permitted to do this through a nearly 75-year-old provision of the US Fair Labor Standards Act. The National Federation of the Blind is seeking to have this provision repealed, supported by 45 other organizations in the United States. But it’s taking more immediate action through the call to boycott Goodwill Industries.

I hope that they can find some way to get it into legislation that people with disabilities have to be paid minimum wage. I know that from watching the struggle in Ontario to get businesses to pay people with intellectual disabilities minimum wage that until recently, success has varied from region to region and business to business. Especially in towns made up of mostly small businesses that don’t have a corporate policy dictating hiring practices and may not have a lot of money to spare.

Work is Work and Employees are Employees. Period.

I’ve seen people with intellectual disabilities do a lot of different kinds of work.  People I’ve worked with have cleaned tables and taken out the trash in restaurants, stocked shelves in grocery stores, done cleaning in a variety of establishments, answered phones for businesses, and  even started their own businesses like walking dogs and doing housekeeping.

Sometimes in those days (as it is now), it was appropriate for someone with a disability to go do a job and charge a flat rate for their services. I remember working with a woman who got $15 a week from a local business to come do their cleaning each week. It took her about hour. That was reasonable compensation for her time and effort.

However, in those days I also saw people with intellectual disabilities go into businesses to help out with activities that were required to keep the business running, such as facing shelves, and not get paid or get paid very little. That’s not appropriate or fair. The employees were expected to face shelves. Having someone do it freed up their time to do other things. That made the work that these people with intellectual did an important part of store work, for which they should have been compensated properly (at the minimum wage)…even if it was the only thing they did as an employee and even if they did it for only an hour a week.

Yeah, I’m Taking This Personally

Those days weren’t so long ago…but it’s gotten a lot better. The tide’s turned quickly on this one (at least in Canada, and at least from what I can see). I’m really grateful that it’s gotten easier for people with intellectual disabilities to earn a decent wage.

But am I offended by this type of nonsense coming from Goodwill Industries? You bet I am. I’ve focused on intellectual disabilities so far, but everything that I’ve read about Goodwill Industries’ discrimination has been about people with disabilities in general. And I’m a person with disabilities.

Goodwill Industries, Meet Me at Camera Three

Hi Goodwill. As a person with disabilities, I’m really insulted that you think that my time and energy is worth so much less to you than those of a person without disabilities. I’m angry that you think it’s okay to pay me slave wages because I have a disability. And I’m furious that you think it’s okay to contribute to the further social devaluement and hardship of a group that’s already socially and economically vulnerable.

I’m not naive enough to think that this sort of thing still doesn’t happen. But, considering what you do, you were one of the last organizations that I would have suspected of doing it.

You’ve got a lot of damage repair to do. Better get on it.

 

For Readers Outside the US: I can’t find any information about Goodwill’s hiring practices in other countries, or whether advocacy organizations in other countries are supporting the boycott to ban Goodwill Industries. Does anyone have any information?

 

More about the call to boycott Goodwill Industries:

http://www.nfb.org/national-federation-blind-urges-boycott-goodwill-industries

http://www.disabilityscoop.com/2012/06/12/goodwill-paying-less/15827/

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The Medical Model of Disability and Civil Rights

By on May 25, 2012 in Uncategorized

Big thank you to William Peace over at http://badcripple.blogspot.ca/ for linking to and commenting on the National Disability Rights Network’s recently-released report, “Devaluing People with Disabilities”. I was not aware that the report was available, and I found it fascinating.civil rights I do worry, like William, that the people who read the report won’t be the ones that really need to read it, but I do like how thorough it is, how it frames the fight for disability rights as a civil rights issue, and that it uses the voices of self-advocates. Perhaps believers in the medical model of disability (especially people who support the use of the Ashley Treatment, discussed extensively in the report) will read it just out of curiosity, or a desire to justify what they believe, getting the report outside of the “preaching to the converted” circle.

“Devaluing People with Disabilities” uses the Ashley Treatment as a jumping-off point for discussion about disability rights as civil rights, illustrated specifically in the the ways in which the medical model of disability permeates ethics committees, hospitals and court systems.  Consequently, people with disabilities are, more often than anyone should be comfortable with, forced to undergo medical procedures (or have life-saving medical procedures, treatment, or even simple nutrition withheld) because of their disabilities.

The Ashley Treatment, the Medical Model, and Civil Rights

The Ashley Treatment refers to a number of surgeries and hormone treatments performed on a six-year-old girl with physical and intellectual disabilities back in 2006. Ashley’s parents, ostensibly to preserve her quality of life as much as possible, had her growth attentuated so that she’d always remain small. Doctors also gave her a hysterectomy and removed her breast buds, so that she’d not have to deal with menses or the sexualizing effect (minimizing, the parents said, her risk of being abused). The parents called Ashley their “pillow angel”, and justified their choices for her by saying that she didn’t have the cognitive capacity to recognize what had been done to her or what it meant she’d be missing.

The ultimate legal problem with the Ashley Treatment (and any medical treatment/lack of where parents, a doctor, or a court decides that a person is too “disabled” to make their own decisions about their bodies and what they choose to do/not do to them) is that it’s unconstitutional – hence the civil rights component.  It’s very much a civil rights issue, even though most people choose not to recognize it as one. There are cases, of course, where a person with a disability has a power of attorney for healthcare, but that’s very different than a doctor advising a family to remove nutrition when there’s no terminal disease, or not perform a life-saving surgery, because a person’s quality of life and prospect for “contribution to society” with their disabilities is so “low”.

The point is, we treat people with disabilities in very different ways when it comes to health care than we do people without disabilities. We would never think of violating the civil rights of a six-year-old without disabilities by removing the uterus and breast buds – why would one even consider such treatments? Yet, for one with disabilities, it was okay to alter her body in drastic and unnecessary ways, to deny her the chance to mature into a grown woman, and to take away her option to have children.

Kurt Decker, Executive Director of the National Disability Rights Network, puts it nicely in the introduction to “Devaluing People With Disabilities”:  ”These conversations happen because the persons being considered are viewed as having little value as they are.  They are considered as not fully human, endowed with inalienable rights of liberty, privacy, and the right to be left alone – solely because they were born with a disability.”

If that’s not a civil rights issue, I don’t know what is.

Read “Devaluing People With Disabilities”, but be prepared – it will shock you. It should, at least.

http://www.disabilityrightswa.org/newsletter/drw-news/ashley-report-docs/Devaluing%20People%20with%20Disabilities%20final.pdf

William Peace’s thoughts on the report: http://www.blogger.com/comment.g?blogID=1556371561007953336&postID=1277439375401526973

More about the National Disability Rights Network: http://www.ndrn.org/

Image credit: cteconsulting / 123RF Stock Photo

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Rabbi Boteach Talks About Children With Disabilities

By on May 2, 2012 in Uncategorized

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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Blogging Against Disablism Day

By on May 1, 2012 in Uncategorized

I don’t often blog on Tuesdays. But today is Blogging Against Disablism Day, anddisablism I’ve wanted to participate ever since I started this blog.

What is Disablism?

Disablism is discrimination based on disability. I’ve faced a bit of it, but overall I’ve been very lucky. I know that many people go through a lot worse than I do, and don’t feel as comfortable as I do standing up for themselves when it does happen. I’ve also been lucky to have a family to stand up for me when I’ve been unable to.

I’ve been working with people with disabilities since I was 15 years old, and blatant disablism has always been infuriating. However, it’s the quieter forms that are more insidious and that don’t get nearly as much attention.

The Disablism of Overprotection

For example…we are really reluctant to let people with disabilities (especially intellectual disabilities) make mistakes.

I once worked with a family where a young adult female with an intellectual disability really wanted to move into her own place. Her parents were very opposed to the idea. They were concerned that she’d made bad decisions about men in particular, and get herself into a bad situation.

I was willing to concede that she didn’t have particularly good judgement when it came to men. But my record wasn’t stellar, either. In fact, every one of my women friends that I could think of had one or more relationship skeletons that came out at least partly out of choices on her part that she thought were fine at the time, but that she really regretted later.

Of course we’d continue to make relationship safety skills part of the preparatory training for moving out. But was it really fair to say “No, you can’t move out,” because she might make a dating mistake? A budgeting mistake? A cooking mistake? I wouldn’t be living by myself if we held people without disabilities to those sorts of standards…would you?

I don’t advocate deliberately putting people in dangerous situations or situations that they can’t handle in order to prove a point. And I understand the impulse to want to protect a loved one with a disability from situations where they might experience failure or hurt feelings or potential danger. But it *is* a form of disablism to deny people chances to learn and grow and discern just what they’re capable of, even if that means experiencing failure or disappointment.

A well-rounded person knows how to deal with failure and disappointment. You can’t learn those skills if you’ve never been allowed to experience either.

Let’s reduce disablism by allowing people with disabilities to have a fully human experience, and all the associated emotions. It’s often difficult enough to have to live with disabilities without the overprotection of others on top.

More about Blogging Against Disablism:  http://blobolobolob.blogspot.ca/2012/05/blogging-against-disablism-day-2012.html

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