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

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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Attn: Editor of the New York Post, re: Americans with Disabilities Act editoral

On April 21, the New York Post published an editorial on the Americans with Disabilities Act editorial that, well, really surprised me.

http://www.nypost.com/p/news/opinion/editorials/handicapping_america_ILRF4YpiggwHJYjGx4OghL

First, A StoryAmericans with Disabilities Act

The first Christmas after my mother died, when I was 20 years old, my father, my sister and a family friend went to New York for Christmas to avoid being around the family home and the memories. We were determined to make it a good trip. We were there from the 26th to Jan 1st. We stayed in a nice hotel and ate nice food. We did all the touristy things. We saw shows. We took *plenty* of cabs.

All of this was pre-stroke, so I didn’t have trouble getting in and out of cabs. But if we’d had to make this trip with me even in my folding wheelchair, I wonder if the trip would have been as good as it was. Given what I know now about taxis in New York, I’d bet it would have been a lot more stressful – perhaps stressful enough to make us consider going to another city.  And it would have been a shame for New York’s economy if we’d decided to go somewhere else that week.

The New York Post on the Americans with Disabilities Act: “…the misery the law inflicts on everyone else seems far more than that of those it helps.”

Seriously?

Let me be sure I understand this, Editor. The Americans with Disabilities Act is making non-disabled people in New York City miserable because:

  • Unscrupulous lawyers are encouraging people to file frivolous lawsuits based on the Americans With Disabilities Act.
  • The cost of making facilities accessible (like pools and subway stations) is straining the city’s budgets.
  • Requiring more accessible taxi cabs or a plan to increase access to existing cabs for people with disabilities is unacceptable Americans with Disabilities Act overreach.
Editor, is your beef not more with lawyers and contractors than  with the Americans with Disabilities Act and those trying to enforce it?
And you need to hear another story.

Hypothetical, But It Could Happen

Imagine you, Editor, as a resident of New York, used a motorized wheelchair. Imagine you got a call that your child, at a friend’s birthday party, had been hit by a car chasing a ball into the street and was in critical condition at a hospital across town.

The dial-a-cab service that provides accessible cabs can get you a cab in an hour. But by the time you’ve mapped a route through the accessible stations, it’s going to take over an hour for you to get there anyway. Your child might not be alive by then.

Is this fair? Or just?

Universal Design Isn’t Disabling

Editor, a physically accessible city is one that allows people with disabilities to work, volunteer, access needed services and spend money (and we know that cities love that!)

It’s one that allows people who have temporary disabilities (from casts and crutches to arthritis flare-ups) to get around more easily.

Heck, it allows parents with strollers to get around *much* more easily.

Please remember, Editor, how easily you could acquire a disability. No one likes to think about that, but it’s true. What would you be saying about this then?

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“Maintenance Effort” and Special Education in America

maintenance effortThe special education budget in Ontario has been cut back further and further over several years, with very real effects of on the education of kids with disabilities. It’s nice to see different special education spending guidelines in America, even if it looked like there were going to be changes this year. It’s all about the obligation to meet “maintenance effort”.

A Change at the Federal Level in “Maintenance Effort”

For non-Americans who don’t know, education in the USA is managed at the federal level (as opposed to, say, Canada, where it’s managed at the provincial/territorial level). Historically, American schools were required to meet maintenance effort when it came to American special education spending. Maintenance effort dictates that schools must maintain or increase what they spend on special education from year to year.

However, Education Departmentwas prepared to release schools from the responsibility to meet maintenance effort this year, without the fines that generally accompany a failure to meet maintenance effort for special education. The amount spent this year in a school would be its new benchmark for special education spending.

And Yet Another Change in Special Education Spending

In response to letter from Kathleen Boundy, a co-director for the Center for Law and Education, the Education Department has changed its mind yet again. Melody Musgrove, director of the Office of Special Education, has rescinded the early decision and declared that schools must go back to meeting maintenance effort. Which makes parent and advocacy groups very happy. But I’d like to let to let them in on a little secret that we’ve known in Developmental Services in Ontario for a long time (and I’m sure a lot of other Ministries in Ontario/Canada know as well).

Meet Me at Camera Three, Advocacy Groups

Maintenance is actually a cut.

I know that we’re all dealing with inflation and rising prices and a bad economy.

Canadians and Americans need to keep on advocating for the funding that’s going to allow us to keep on providing quality education for *all* children, not just children with disabilities.

But you know all that, don’t you?

Giving Credit Where It’s Due

Excellent job, parents and advocacy groups and attorneys and  Kathleen Boundy, on getting the decision on not meeting maintenance effort reversed.  Keep up the great work. It’s a good day for special education in America.

For more information: http://blogs.edweek.org/edweek/speced/2012/04/feds_back_off_of_letting_distr.html

Have a great long weekend, everyone.

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What Now, Rosie O’Donnell?

So, I’ve been keeping an eye on reaction to Rosie O’Donnell’s interview with Chelsea Handler overRosie O'Donnell the last couple of days.

Disappointing, to Say the Least. Rosie O’Donnell’s Taken a Beating Over This.

People have been saying some very nasty things about Rosie O’Donnell (and to her, if her Twitter feed is anything to go by). I was shocked by the venom of some of the comments that I heard had appeared on Matt Roloff’s (of The Learning Channel’s “Little People, Big World”) Facebook page, but when I investigated tonight it looked as if those comments had been removed. The remaining ones, calling Rosie O’Donnell things like “loudmouth” and “ignorant” and accusing her of planning the whole piece as a way to get the Roloffs on her show (in response to call from Matt Roloff for compassionately helping Rosie O’Donnell to move past her anxieties about little people) were difficult enough to read.

I don’t think that Rosie O’Donnell is blameless here. I think that she didn’t choose the most sensitive way to express what she was trying to say, and I understand why people are angry. But, as a person who is “different”, I have always said that I’d rather that people express the ways in which my disabilities make them anxious, if this is an issue, and ask me whatever questions that they need to in order to alleviate their anxiety. I’m not going to fault her for doing that, especially when it obviously does make her feel ashamed that she feels that way.

Rosie O’Donnell…Meet Me at Camera Three

I’ve been reading your Twitter feed and see how frustrated you’re getting at apologizing over and over and not being sure what else you can do. I think, if I was a little person, what I’d want to hear now is what you plan to do now that you’ve admitted to the world that you suffer from this anxiety.

I think that you can understand this. You only have to imagine a conversation between two people where one described how she’d grown up in a house where she was taught that same-sex attraction was something to be fears and that was lesbians made her anxious, even though it made her ashamed to feel that way; how she couldn’t understand how lesbians had sex; how she couldn’t wrap her mind around the idea of two women being attracted to each other, couldn’t reconcile that with her conceptions of healthy relationships…and I’m sure you’d not only wholeheartedly suggest that if he or she really want to get over this anxiety, there are resources that he or she can access to have questions answered, and that she should try to find some lesbians in loving relationships with whom she can spend some time and get to know, so that she can see that they’re not that much different than everyone else: people with jobs and children and good times and bad times that contribute to their communities and live in loving relationships…just with other women.

And I’m sure that you’d know to suggest that if the anxiety has reached the stage where it’s very disruptive to her life, maybe professional help is warranted. Phobia treatments are very effective and actually work quite quickly when the individual is really committed to them.

Of course, you don’t owe anyone details about what you plan to do now, if anything. But you keep asking on your Twitter feed, “I’ve apologized…what more can I do?” Maybe sharing that you plan to do something will heal some wounds.

For the Rest of Us

Enough of the attacking rhetoric and the name-calling. You don’t create a more inclusive world by calling *anyone* names, no matter how intolerant you think they’re being. It really just brings you down to the level at which that you believe they are.

Don’t make me say it again.

Matt Roloff’s Facebook Page:  http://www.facebook.com/RealMattRoloff

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Time to Rethink Sheltered Workshops?

A class action suit was filed on January 25th in Portland, Oregon on behalf of the Cerebral Palsy sheltered workshopsAssociation (Oregon chapter) and eight individuals with intellectual disabilities. The first of its kind in any state, the suit claims that sheltered workshops as they are run now in Oregon are in violation of the Americans with Disabilities Act and the Rehabilitations Act.

http://www.chicagotribune.com/news/sns-rt-us-oregon-disabled-lawsuittre80p07g-20120125,0,7475636.story

Very interesting. I hope they win, and that similar suits are filed in other states. It wouldn’t hurt to see some more action in Canada on this either, although there’s already been significant action in Canada to move away from the sheltered workshop model.

I’ve Heard the Arguments for Keeping Sheltered Workshops

  • Parents and caregivers like them because they give people with intellectual disabilities a place to go for the day.
  • People who have been in sheltered workshops for a long time often like them because it is a place to go during the day where they can be with their peers, do some work and make a bit of money.
  • It’s an easy way to give people with intellectual disabilities some employment opportunities.

Those Arguments for Keeping Sheltered Workshops Don’t Work for Me

  • People with intellectual disabilities deserve more than a “place to go for the day”. Agencies should not be providing baby-sitting services or warehousing facilities. As the article points out, that’s going back to the days of institutions.
  • If a person with disabilities wants to meet up with other friends who have disabilities, why come to a sheltered workshop to do it? Why not go for lunch or coffee, or visit someone at their home, like people without disabilities do?
  • Why do a job in a sheltered workshop setting and not receive adequate compensation when a person with an intellectual disability can do the same job out in a community setting, get paid for the work, make new friends and have new experiences? Isn’t money better spent on providing the support people need to obtain those kinds of employment opportunities?

Oregon Service Providers, Meet Me at Camera Three…

I  know how you guys thought this was a best practice, but you’ve got to look at how you’re coming across, and ask yourself if sheltered workshops are really the best way to meet the needs of the people you support.

Service providers are the ones supposed to be setting the good example for everyone else, by promoting the importance creation of opportunities for them to participate with dignity, equality, and full inclusion. What kind of message does it send to your communities when you, as service providers, keep them sequestered in buildings, without opportunity for interaction with the community, paying them less than minimum wage for jobs?  What kind of message does it send to the people you support?

Think about it.

 

 

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Judge Upholds Order on Accessible Taxis in New York City

Meanwhile, from the “Accessible Taxis in New York City” file…

Despite a motion by New York City’s Taxi and Limousine Commission (TLC), Judge George Daniels’ freeze on the Commission granting medallions to non-accessible taxis remains in effect.

http://newsandinsight.thomsonreuters.com/Legal/News/2012/01_-_January/US_judge_to_Albany__NYC_taxis_must_comply_with_ADA/

New York seems determined to go down fighting on this one. Seeing as their relatively small number of accessible taxis (and the plan Bloomberg had previously proposed to meet taxi access needs for city residents that use wheelchairs) was found to violate the Americans with Disabilitiesaccessible taxis in New York City Act, one wonders why the TLC thinks that New York City should be above the law.

I was not aware that they had filed a motion to stay Judge Daniels’ order on accessible taxis in New York city.  It does seem in keeping with the arrogance, not to mention the disregard for the transportation needs of both citizens of and visitors who use wheelchairs, with which Bloomberg and his crew have handled the lawsuit over accessible taxis in New York City.

See the category called “Accessible Taxis in New York City” for previous blog posts on this story.

On a Brighter Note…

The Philadelphia Parking Authority (PPA), which also faced a lawsuit in July 2011over lack of accessible taxis, is currently moving much faster with its plan to create a totally accessible fleet than New York is. The city had no accessible taxis in July, and now has three, with plans for 300 by the end of the year. By 2016, Philadelphia will have 1600 taxis on its streets.

http://articles.philly.com/2012-01-22/news/30652935_1_accessible-taxis-wheelchair-accessible-cabs-medallions

Mayor Bloomberg, meet me at Camera Three…

(Which, for those of you who don’t watch “The Daily Show”, is what host Jon Stewart says when he wants to say something to just one person.)

I don’t live in New York City, so maybe I shouldn’t I be talking for New Yorkers that use wheelchairs. But I did have to use a wheelchair for over a year, and I struggled with the accessibility issues that came with it…and I’ve watched my own small town try to become more accessible for people with disabilities. I know that it doesn’t happen overnight. I know that there’s planning involved, and budgeting, and that sometimes it has to happen in bits and pieces, so that sometimes the ultimate goal *is* several years away.

I think that most people with disabilities understand this.  If you took a poll of your voters who use wheelchairs, I think they’d probably tell you that they’re not expecting you to make oodles of accessible taxis in New York city a reality overnight. They’re reasonable people.

But I think they do want to see some movement on the plan to increase the number of accessible taxis in New York city, because this is about more than transportation. It’s about knowing that their mayor values at least their vote enough to take their concerns seriously, and about knowing that their presence in New York and the contribution that they can make to their communities in valued regardless of disability.

Because if you don’t feel strongly about giving people with disabilities an easy way to participate in New York life – that sends a message that you don’t really want them involved in New York life. And that’s a terrible message to have to live with from someone that claims to be representing your best interest.

London has done this. Philadelphia is doing it. You can do it. New Yorkers know it won’t be overnight. But for God’s sake – get started.

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