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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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Blogging Against Disablism Day

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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Decisions, decisions…

Elizabeth McClung and I have been having a conversation via comment on my essay “Get Up” decisions(from my 2006 book “Run, Run Because You Can”), which I recently posted last week. It’s got me thinking about decisions. Specifically, it’s got me thinking about how everyone has the right to make bad decisions.

Elizabeth Said:

“Trying 10 times and failing might mean setback right?

I can’t stop thinking about the complicit attitude and acts of visitors, nurses, and others in keeping this man who wanted to not be in a wheelchair to force him to be there…..for his own good (determined by others).

You wrote that your safety when climbing a mountain is not assured. So why did you get to climb and he got locked down against his will? Without further information I don’t know but it doesn’t amuse me or delight me, it makes me alternate between nausea and anger, as it seems a recorded discrimination based on age, not on will.”

I always appreciate Elizabeth’s feedback, because she often helps me to view things in different ways. I’d never viewed the story in the way she suggested. I’d always assumed that the staff had what they considered a good reason for keeping this gentleman from leaving, which was obviously what he wanted to do. Her comments made me start to think about what I would I would have done as this man’s worker if he was person with an intellectual disability.

What Would I Have Done?

It’s difficult to say, truthfully, because there’s a lot of information that I don’t have. Perhaps, like I was right after my stroke, he was confused about the new limitations on his body and didn’t realize that he couldn’t walk anymore.  Perhaps he had severe dementia and didn’t even realize where he was. Perhaps he was simply too ill to go home and didn’t want to accept it.

I realized after thinking about this that I really don’t know much about the policies for keeping someone in the hospital who doesn’t have awareness of how ill he or she is. If there are psychiatric factors associated with the person’s diagnosis, then the doctor may choose to keep him or her in the hospital on that basis.  This man may also have had a power of attorney making decisions for him. Or he may have been waiting for transfer to a physiotherapy unit. I had to wait awhile.

But, assuming that none of these were variables, did the hospital really have a right to keep him in when he’d so strongly expressed a preference to leave? Plenty of people without disabilities choose, for a variety of reasons (some of them not-so-logical)  to leave hospitals against medical advice.

The Right to Make Bad Decisions

I’d need someone who works in a hospital to answer me for sure. And I know that on some days I certainly wished I could “save” the people I worked with from making decisions that I knew were going to make life infinitely harder for them, especially if I couldn’t understand why they were making those decisions. But making decisions for people wasn’t my role, ever, and I would never want it to be.  It wouldn’t be fair of me to say, “This is better.” I just tried to present options, emphasizing that the choice was the person’s.

Everyone’s allowed to make bad decisions, no matter how much we wish they wouldn’t. I hope that if I’d been this man’s worker, I’d have fought for his right to make the decisions he wanted, even if they were ones with which I didn’t agree.

And I certainly would have had a conversation with the staff about the belt restraint on the wheelchair. Restraints should *always* be a last resort.

Thank you for the conversation, Elizabeth. I always enjoy talking with you.

Check out Elizabeth’s blog at http://elizabethmcclung.blogspot.com/

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Wheelchairs and Airline Travel

Let’s talk about physical disabilities and air travel.

“Up, Up and Away…”

I didn’t do any air travel when I was in my wheelchair, but I’ve traveled several times with my cane. Besides the fact that I’m slower going through the security scans (it takes me more time to put my cane through, take my shoes off, get myphysical disabilities computer out of my carry-on, get myself together again on the other side) I haven’t really encountered any difficulties beyond what someone with physical disabilities and a mobility aid might expect to experience: my gate has been changed at the last minute and no one’s told me, and one time I tried to get on at pre-boarding as instructed at the ticket counter, was told to to sit down and then was later told I should have gotten on at pre-boarding.

But the airlines were also more than willing to deal with those little errors by immediately offering me a ride on a cart to my correct gate, upgrading me, and just generally being pleasant and very nice to deal with. I really have no complaints.

Others with physical disabilities haven’t been so lucky.

“…taking his legs and dismantling them and giving them back broken.”

I had no idea that they dismantled wheelchairs to make room on flights.

http://www.kfor.com/news/local/kfor-airline-returns-mans-wheelchair-in-pieces-20110817,0,6355799.story

As long as my journey back to mobility was, I’ve never known what’s like to have to give up my walking aid to a stranger, knowing that they’re going to take it apart and trusting that they’re going to get it back to me in one piece. I imagine that if you fly a lot in a wheelchair, you learn to live with that reality, but I would think that there’s always got to be some anxiety behind it. We talked in the posts about disability sensitivity about how even having another person even touch or lean on a wheelchair can be anxiety-producing for its owner, because the chair really is a part of the owner’s personal space. Imagine being presented with that part of yourself in pieces at the end of a flight by people that you’d entrusted it to.

And apparently this happens more that we hear about, when in many cases it’s not necessary to break down the chair.

Before dismissing this story as a man being a “victim”, as one of the commenters did, just think about it. Think about feeling physically powerless for a few flight, on the understanding that you’ll get your power back when you land – and then you don’t.

Think about how it feels to be respected so little, that people hand your legs to you in pieces at the end of the flight and just say, “Sorry”.

Soon after returning home from Ottawa Rehabilitation Centre, I had to call the Ontario Disability Support Program. I don’t remember who I talked to. I’ve since had many, many positive dealings with them, through work and in my personal life. But I wasn’t used to dealing with government services at all that point; I was overwhelmed by my new circumstances and the new information being thrown at me. When I got off the phone, I started to cry.

“What’s wrong?” Dad asked.

“They made me feel disabled,” I sobbed.

Let’s do that to as few people as possible, and let’s start by treating people in wheelchairs with respect on the airlines.

 

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So, What Are You Thinking?

Sometimes I wonder what the people I’ve supported who have intellectual disabilities are thinking.

What Lengths Would You Go to in Order to Make Your Wishes Known?

The people with profound intellectual disabilities, who don’t communicate verbally and need a lot of assistance with activities of daily living…I’m convinced that if they were suddenly given the to communicate verbally, they’d probably ask us why the hell it takes us so long to pick up on the other ways that they try to tell us things, and then promptly tell us to fuck off.  I probably would – for all the times that people insisted on feeding me food that I didn’t want, or sat me in front of the TV when a show that I hated was on, or didn’t realize that I was crying because I had a toothache, not because I was sad and needed a hug.

Just imagine a scenario where you have a strong preference about what happens, and imagine the frustration on not being able to communicate if someone *gets it wrong*. Over and over. Of course, they can’t help it that they can’t understand the ways that you try to communicate your preference, so it’s not their fault

But it’s your fault, either. Did you ask not to be able to talk?

Sidebar…

(Just for the record…working with people with the sorts of profound intellectual disabilities that I talking about can be very difficult. In my attempt to illustrate a point, I don’t mean to imply that the people that provide sensitive, compassionate care at home and in group home, hospital, and school settings don’t do a good job, because there are certainly many, many people out there who take that job very seriously are excellent at it. I did a personal care placement in a group home; I know it’s not the area of support in which I’m strongest, even when I was working without disabilities. It takes a special person to do that important work, and thank God there are people that love doing it.)

Giving People with Intellectual Disabilities Control by Watching for the Ways in Which They Communicate

I worked one summer at a camp for adults with intellectual disabilities. One week, I worked with Gertie, a woman in her 70’s. I liked her. She was in good shape for her age, she was tough, and despite a speech impairment, she let it be known what she wanted (which was mainly a cup of tea after every meal and an afternoon nap.)

But her programming notes indicated that in order to have her cup of tea at a meal, she had to have at least two glasses of milk, juice or water at the meal, to be sure that she stayed hydrated. She didn’t like that, and drank very grudgingly. During lunch on our third day together, when she was working on her second cup of juice, I started to notice the glares she was giving me. They got meaner and meaner.

“Uh…anyone want to switch it up this afternoon?” I asked. “I’m kind of getting a vibe that Gertie has had enough of me. Is that it, Gertie?  Are you sick of me?”

copyright FreeFoto.com

“Tea,” said Gertie.

Thankfully, another counselor was willing to spend the afternoon with Gertie if I went to Swimming with her group. By supper time, Gertie had stopped glaring at me. But if I’d been her, three days of some youngster not letting me drink my tea until I’d forced down two glasses of sicky-sweet juice would have left me glaring too.

Another man that I worked with for just one day that summer arrived with a notation in his file that said that although he didn’t communicate verbally, we would know that he was anxious because he would grind his teeth.

“How am I going to know if he’s grinding his teeth?” I thought as we unpacked his bag together.

I found out soon enough, when he started grinding them so violently that I could hear him on the other side of the cabin. This continued the entire afternoon.

I went to my supervisor after dinner and said, “I’m not taking my evening off tonight. I’m the one who’s been with him all day, and I’m not comfortable tossing a new person at him until he’s feeling okay enough that the teeth grinding stops.”  (It didn’t occur to me that maybe I was the one making him anxious, but it didn’t matter anyway. My mother took a turn for the worst that night, and I had to leave camp quickly to go to Toronto).

The Point

People with profound intellectual disabilities especially don’t have a lot of control over what happens to them. Service providers check themselves more and more these days, to be sure that they’re giving people they support as much choice as possible (not that we should have the power to “give” or “take” something that is rightfully theirs, but I hope you know what I mean.)   When someone is highly dependent on others for care, particularly when they can’t communicate, keeping that high level of personal agency present in care is difficult.  But it’s *vitally* necessary.

Because it’s got to be terrible not to be able to make your wishes known verbally. We’ve got to be very observant when we work with people with intellectual disabilities who can’t communicate verbally, to pick up on any signals that may consistently indicate a state of mind or a desire. It’s the least we can do, really.

 

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Support Plan, Please

Agencies that support people with intellectual disabilities usually make a plan with each person with whom they’re involved. These plans detail how the person would like the agency to be involved with them: what sort of skills the person would like to learn, what the person feels he/she needs assistance from agency workers to do each day, and what the person’s goals are in general. These plans are vitally important. People have the right to decide what kind of supports that they most want or need.

What does the support plan say?

Intellectual Disabilities: Those Old Assumptions…

It’s easy enough to assume that when someone is doing something that isn’t having the desired result, that they *want* advice on how to do it right. I find that in settings where adults with intellectual disabilities in particular gather together, such as day support programs, this sort of advice often comes across …and is given whether the person wants it or not.

It’s natural to want to coach on something on something like social skills or even hygiene skills (and, working with people with intellectual disabilities, opportunities for these kinds of coaching do come up with people…but they also come up with people I encounter just hanging out in my favourite restaurant, too, and this is my point.) What if the person (in either example) hasn’t indicated that they want coaching on that? Doesn’t it then just become rude?

Following Support Plans Makes Support More About People and Less About Us

With people with intellectual disabilities, it doesn’t seem to be as often regarded as rude, even by agency staff people. Not only is the coaching given, but it can often come across as as heavy-handed and condescending. I’ve seen this in several agencies, and it bothers me – and not just because I know that I’ve been guilty of it myself. It’s because there’s an implication that staff people are somehow better, that they can:

1. Decide what a person needs and doesn’t need, regardless of the person’s feelings on the subject.
2. Be higher in power and status than the people they support

I don’t think that staff in agencies do this consciously – I know I didn’t – but I think we really need to at all times do our best to cultivate an atmosphere in agencies that work with people with intellectual disabilities where everyone is at first an equal, and where the people supported are treated the same as anyone on the street would be. Having clear support plans may help set the support boundaries that help to do that they leave less room for us to decide what we *think* people need and more energy for us to work with people on the things that they’d like to work on.

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My Choice, Your Choice

Last night I watched a few minutes of “Hoarders” on The Learning Channel. I’ve seen the show before, and I generally avoid it; not being a terribly organized person, and a bit of a pack-rat (not a hoarder, but a pack-rat), it makes me feel just a little bit too anxious.

How Would YOU React?

 But coming off the heels of a recent discussion with a psychologist friend, I was  fascinated by the “hoarders” on last night’s show. Amanda has done work in a  number of areas on psychology (including work with people with intellectual  disabilities, which is the area in which I’d do my concentration in if I was a  psychologist). She doesn’t like “Hoarders” and the methodologies used in the  show at all. She said to the group of us that were talking the other night that  if we realized just how meaningful this “stuff” that looked like garbage to us  was to the people that hoarded it, and how traumatic it was to them to even  think about giving it up, let alone have people march in and forcibly take it from them, we’d look at the show much differently.

Last night, as I watched an elderly man yell at his daughters, “Well, God bless America! Thank God you two are able to think so clearly on behalf of your father!” as the rusted-out cars in his yard were towed away, I finally got it: Yes they didn’t function anymore. Yes, they were an eyesore. But they were his cars. Nobody understood why he was so attached to them…but he was.

And if someone tried to haul away something really important to me without my consent, I’d probably raise bloody hell too.

“Why Are You Acting That Way?”

It made me think about times when I’ve supported people with intellectual disabilities. Sometimes, no matter how well I think I know a person, he or she will put up a block to meeting a goal that absolutely baffles me. The person could be making great progress, moving really quickly – and we hit a wall. It might be a behaviour. It might be a sudden fear of doing something. It might be a total change of heart, deciding that he or she doesn’t want to work toward that goal anymore, or an insistence that he or she does, but just never being ready to do the work.

I’ve learned from experience that if I decide that the goal still needs to be pursued and I keep pushing, I’m more than likely to get a meltdown like that old man’s. He needed his cars; no one understood why, but he did. Sometimes people just need to stop and regroup; I may not have a clue why, but they do. You take the choice away, you take away something larger and much more important.

Not So Easy in Practice…But Worth Trying When Possible

Of course, it’s not always this easy. People who hoard are generally living in houses that are physically unsafe for anyone to be in for even short periods, and some goals are a matter of “have to attain”; when the people involved don’t understand this, these situations are nothing short of absolutely heartbreaking, and may require intervention of a social or legal body to see that everything’s done that needs to be done to ensure that everyone involved is safe. In those cases, arranging to have someone else make decisions about the person’s health for a period may be necessary.

When it’s possible, however…when it’s feasible…we all need to remember that every single one of us is a jumble of things that move us forward…and things that sometimes hold us back, and other people may not always feel like making those “holding back” things obvious to us (or may not even be able to). And that there’s a reason why it’s very, very difficult to get someone declared unable to make their own choices. We need to realize how vital it is to let people choose, even when it’s difficult and even when people are making bad choices.

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