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Friday, 29 July 2011

Support Plan, Please

What does the support plan say?
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.

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.

Tuesday, 26 July 2011

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.

Monday, 25 July 2011

Ontario's New Photo Identification Card: A Needed Change

Ontario's new photo identification card
Yesterday, Ontario joined eight other provinces that offer a photo identification card with an address for those over age 16 (not to be confused with the Ontario Health Insurance Plan photo card, which isn't considered photo identification).

Life Without Photo Identification


After my brain AVM surgery, along with the stroke, I also started having seizures - full-body, falling-down, loss-of-consciousness seizures. As far as anyone could tell, they were happening due to scar tissue left in my head after the surgery. Another surgery to remove the scar tissue was discussed, but dismissed for various reasonsen (including the fact that I just couldn't see the point of having another surgery when it was surgery that had caused the scarring to begin with). But because I was having seizures, my driver's license was revoked.

I wasn't prepared for how limiting this was going to be. In some ways, I felt the loss of my driver's license more keenly than I did the restriction of movement on my left side. Even when I was feeling well enough to try and get out of the house a bit, I was dependent on my father for transportation, because there was no public transportation in our town. And when I was well enough to move closer to to town and walk there myself, I was still reliant on rides if I wanted to attend events or see friends who lived even a relatively short distance away. My father and friends have been wonderful about providing rides; even people in town have been great about giving me rides places if they see me on the ride. But it doesn't compare to the freedom of having your own car.

On a purely practical note, not having my driver's license puts me out of the running for most jobs in my field in the area. I was lucky that the most recent agency at which I worked went above and beyond to work with me on the transportation issue; it's been an issue when seeking employment at other agencies.

The Things You Don't Think About


Most people with intellectual disabilities with whom I've worked with don't need a driver's licence to drive, but they feel the inconvenience of not being able to get one as well. This new identity card is going to be great for them.

I didn't know these things, because I was 22 when my license was revoked and then I just used my passport and a phone bill, if necessary...but many of the people I've supported haven't had a passport, and  you need some sort of photo identification to:

  • Open a bank account

  • Vote

  • Rent a video/DVD (depending on store)

  • Book a hotel room

  • Cash a cheque

For youth especially, as they prepare for adulthood (whether they have disabilities or not; plenty of kids without disabilities don't get a driver's license, for various reasons) the first item on the list is especially problematic.

Creating Opportunities


As a person who can't hold a driver's license, I will be applying for this card. I don't like carrying my passport everywhere with me, but I've long been uncomfortable with the idea of having no photo identification. Creating this new photo identification card is a good move for the Ontario government, and an excellent way for people who can't/choose not to have a driver's license to ensure, from the age that people become licensed drivers, that they have access to the other rights enjoyed by people who do have a driver's license.

See  http://www.mto.gov.on.ca/english/dandv/driver/photo-card.shtml for more information on the new photo identification card.

Sunday, 24 July 2011

Blog Profile: "My Name is Sarah"

Sarah Ely
I found a new blog to add to my list of favourites.


“My Name Is Sarah”

I found it on another blog’s blogroll. I clicked on the link: “My Name is Sarah”. The first thing I saw was a picture of a dark-haired girl in her teens or early twenties, wearing a red hooded sweatshirt, standing in front of a building that looked like it was maybe on a university campus. I could tell by her facial features that she had Down’s Syndrome, but that’s not what drew me to her face initially.

I saw her soft smile and her and her pretty eyes first, and then how confident she looked, with her arms crossed in front of her. Undernearth her picture were the words, “My name is Sarah. This is my real life story.”

According to Sarah’s profile, she is almost 22. She has a picture up on her profile of her at her high school graduation. I found other pictures of her as I explored her blog: on a trip to Holland, with family and friends, at music camp, working at her job at a fabric store…she makes several entries a week, with pictures. Most of her posts get at least a couple of comments (which I know from personal experience is hard to do!) The big picture that comes of it all is one of well-rounded young woman, happy in her life and well-integrated in her community.

Another Way of Creating Community and Opportunities


I know from the work that I’ve done that there are a lot of obstacles to creating opportunities for personal growth and community involvement for youth with intellectual disabilities. I think it’s wonderful that the Internet is becoming another place to create those opportunities. It brings up new challenges and questions for parents and educators, as we determine the best ways to educate people with intellectual disabilities to keep themselves safe on the Internet. But it also raises questions that are more fun to explore:

• How can we make social networking and blogging sites as accessible and easy-to-use as possible for people while keeping them safe as possible for people with intellectual disabilities to use?
• What kind of supports do people with intellectual disabilities need to safely and effectively use the Internet? Is there a way to build those supports into the websites themselves?
• What kind of things would people with intellectual disabilities presently use the Internet for? What would they like to use it for?

I use the Internet for a number of things: research, education, communication and community-building, self-expression. I love Sarah’s blog because she uses it for self-expression, communication, and community-building…and she certainly educates with it. I’m totally inspired by her refusal to let her disability stop her from having a “real life story”, and think it’s awesome that she uses her blog to share her story with the world.

So I encourage you to go take a look: http://sarahely8989.blogspot.com/ I’ve also put a link to her blog up in my blogroll.

Go Sarah! You’ve got a fan in Canada who is behind you all the way. :)

Thursday, 21 July 2011

Work and ODSP - The Case for Providing Choice

When I first started volunteering with people with intellectual disabilities, long before my brain avm and surgery, I was perplexed as to why the people on ODSP that the agencies supported didn't work more.

Shouldn't Everyone, Even Those on ODSP, Work if they Can?


I knew that many of these people were on Ontario's government support system for people with disabilities: the Ontario Disability Support Program (ODSP). I knew that you could only make a certain amount of money each month before your earnings started to affect how much you got from ODSP each month. And I knew that many people with disabilities were highly motivated to stay on the ODSP program because ODSP provides medical benefits that most jobs that a person with intellectual disabilities would not be able to obtain.

However, being still in my teens at the time and being blessed (cursed?) with an over-developed sense of fairness, I wondered why, if these people couldn't work for pay, they didn't volunteer more. There were definitely places in the community that were happy to have them volunteer.

Why did I have to go to school all day, 5 days a week during the school year and then spend 5 days a week working all day, and my parents have to work all day, every day to keep my family going, when the people that I was volunteering with could simply decide that working wasn't something that they wanted to do, and sit around and collect a cheque?  The question festered in the back of my mind. I know that it festers in the back of many peoples' minds.

A Change...but Why?


Fast forward years later, after the brain AVM and the surgery, to working with youth with intellectual disabilities. Not very many of the youth with intellectual disabilities that I worked with decided that they didn't want to work when they were done school, but there were a few who did. I counted them as successes in my program, because, even though they weren't out and doing something, they truly were doing what they wanted to be doing. I'd have rathered that they be out and working, because I knew they were going to get bored very quickly, but it wasn't what they wanted. So we planned for them to be home.

I hadn't resolved for myself why this had become "okay" for me at this point, except that I now strongly believed that people should be allowed to choose what they wanted to do in life - no matter what I, or anyone else, thought they "should" be doing.  It wasn't until a debate on an internet  message board with somebody who thought that people with intellectual disabilities shouldn't be getting any help from the government or government agencies at all, that volunteer service would more than provide for their needs if we'd just let it (*that* particular conversation got me right riled up, let me tell you) that I sat down with a pen and paper and worked out for myself exactly why I felt income support for people with intellectual disabilities was necessary and why I thought they had every right to decide exactly how much or how little they wanted to work while they were receiving it. That cemented my change of heart about what people on ODSP should/should not be doing.

When It's Not Your Fault that You're Not Wealthy Enough to Choose...


People who get to the point where they can decide how much they want to work usually do it in one of two ways:  They come into adulthood independently wealthy (or, by some twist of fortune, become independently wealthy), or they work really damn hard to get to the point where they can retire early or at least take a reduced schedule...and you have to have a fairly high-paying job to allow you to do this.

People with intellectual disabilities generally don't have the option of going to school to get the education required to get a really high-paying job that's going to allow them to retire early, or have a lot of money to invest. You can't invest while you're on ODSP.  In fact, you can't have more than $5000 in your bank account at a time when you're on ODSP, or you're cut off.  The money you get is for survival, not for building a future.

It cuts down the options. No savings. No education. They can't make the choices we do, because they don't have the monetary resources to make those dreams a reality, nor the options of going to, say, college or university to get better-paying jobs.

In fact, for some people, meeting their basic needs on their monthly ODSP allotment is a dream that they can't make a reality.

Once I realized how far behind the eight ball not just people with intellectual disabilities, but people with disabilities in general are in society, it made me look with more patience and compassion on those who chose not to find work while on ODSP. I did choose to work. But I've been blessed with a good education and very supportive family and community to help fill in the "gaps" that have made working difficult for me; not everyone is so lucky.

I'm not trying to be negative; I sometimes just need to acknowledge the realities of the world that we live in.

Wednesday, 20 July 2011

My Brain AVM Story: Now We're Cooking!

Should have kept it simple.
I've never been great cook. I was an even worse cook after my brain AVM surgery and stroke, when I only had one hand to work with.

One of These Things is Not Like the Others...


My mother was a great cook and a great baker. My sister Rachel has learned to make most of her recipes and does a lovely job of it. My father caught on to cooking for himself quite quickly after my mother's death, and can prepare anything he needs to, from a can of soup to a pot roast to a roast goose for the Christmas holidays.

And then there's me. Even before my stroke, my idea of preparing for a dinner party was to ask the guests, "What do you like on your pizza?" But I could feed myself, as long as I kept it simple and didn't stray too far from typical student fare.  My best dish was chicken fajitas; and when  Kate, my occupational therapist, broke it to me in Penatanguishene Rehabilitation Centre that the time had come for me try preparing my own lunch, I told that it was chicken fajitas that I wanted to make.

An Ambitious Choice


I always was an overachiever. It didn't even put me off when Kate told me that most people chose to make something easier, like a sandwich. I really think that I didn't have a clue just how difficult it was going to be with one hand, even with adapted cutting boards and utensils, to:

  • Chop vegetables

  • Chop and cook chicken

  • Shred cheese

  • Get everything arranged so that it was where it needed to be, when I needed it to be there.

  • Time the meal so that nothing ended up getting cold while I was preparing other things.

I started an hour before lunch...and worked right through lunch. Everyone was done by the time I got the dining room. I was exhausted, and I didn't even feel like eating.  One of the two other young people who passed through the Centre while I was there happened to be there that week; we didn't like each other, for a number of reasons. She walked through the dining room as I sat there staring at the fajitas that had taken every ounce of my energy to make, and said what was probably the only sincere thing she said to me the entire time she was there: "That looks really good."

I burst into tears.

"What did I say?" she demanded.  "What did I say?" she said to Kate, who had just walked in the room.

"She's tired and she needs to eat her lunch," Kate said. "Right, dear? Eat your lunch."

Fuck my lunch, I thought. I don't want to do this if it's always going to be this hard. 

Still Eating


Like everything, food prep got easier.  Like I said, adapted cutting boards and cutlery (knives especially) are available to help with cutting things. I usually just buy veggies pre-cut, though. as it still takes me so long to cut things, and the adapted boards just don't stabilize some things very well.  I still basically eat like a student: easy meals, cereal, sandwiches, some microwave meals. Every now and then I get ambitious and try something new and a little more complicated.

I do need to own that I've fallen down in this area of occupational therapy, though. If I just practiced cutting veggies more, I'd likely get better at it fairly quickly.  But making complicated meals was never a priority before, so it's not likely to become a priority now.

I don't make chicken fajitas very often anymore. But I have, since that day in PGH. They were really good, they only took 45 minutes, and I didn't cry. It was a good day.

Excuse me; I'm kind of hungry. I think I'll go make a sandwich.



Tuesday, 19 July 2011

"Please Don't Feed the Disabled People"

All things considered, the town that I live in is very good to people with disabilities.

Living with Disabilities in a Small Town


If I've ever been in trouble (like, I've felt a seizure coming on or I've simply needed to sit down and rest), local businesses have been more than accommodating about letting me sit down and get a glass of water, or get a cab if I'm walking somewhere. I've actually had seizures in public, sometimes with not even enough warning to say "Seizure" before I've passed out, and woken up in the hospital; once it was a nurse from Toronto in town for the weekend who took it on herself to call the ambulance, and the other time, being in a cab, the driver simply turned around and drove me to the hospital.

The toughest kids in town have fallen over themselves to open doors for me, and I've had complete strangers offer me a ride when they see me start to walk home. I actually got the name for this blog from how I imagine many of the people in town see me (the ones who don't know me, at least): "the girl with the cane" who's always walking around.

I've also felt grateful that the folks that I work with who have intellectual disabilities have a generally good experience in my town. People know them, they do volunteer and paid work, they're active in churches and community groups.  They're recognized and, for the most part, welcomed in the community. Not to say that things are perfect. I've heard people mock them. But I think that, generally, people know who they are and they keep an eye out for them. I appreciate that. I've known some of these people for over half my life, and I like to think that there are people who appreciate their presence in the community as much as I do.

If anything, sometimes I wonder if they're a little *too* welcoming...

Popcorn Break


My town, though small, did have a movie theatre for a long time. I worked there for a summer in my teens, serving popcorn and pop and chips. Every night without fail, a middle-aged man with intellectual disabilities named Howard used to stop by the theatre on his evening walk for a free box of popcorn. It was a ritual that the owner had started, and Howard obviously expected it.




This did not sit right with me.

"We make other people with disabilities pay for their popcorn when they come to the movies," I said to my co-worker, who'd been there several months longer than I had. "And no one needs that much popcorn."

She shrugged. "Do you want to tell him that he can't have it, after all this time?"

"Well, no..."

So I watched it go on, night after night, feeling more and more uncomfortable with it. I could remember a time when this really wouldn't have bothered me, but I'd been volunteering with a local agency that supported people with disabilities for about a year, and it didn't now. This wasn't like feeding a deer that wandered into your backyard every day.    This was a human being with disabilities who was learning that,for some reason, he was entitled to special treatment. Maybe he didn't understand why he was getting free popcorn - but the rest of us knew. I wanted to know what our boss got out of giving Howard free popcorn every night.  The only thing I could think of was that he thought that he was somehow doing him a favour, or that he thought it was "cute" when Howard asked, "I have popcorn, please?"

I never did ask him why.  But when my father mentioned that he'd seen Howard getting free food somewhere else in town one day, I got annoyed.

"I really wish they wouldn't do that," I said. "He has his own money - I've seen him use it. He doesn't need hand-outs, and he doesn't people making him think that it's okay to go around asking people for food. That's not a good way to function in society."

"We're living in a society here!" - George Constanza


I only worked in the theatre one summer, and I don't know if the ritual with Howard stopped, or when. I know that a lot of people would argue that we really weren't doing any harm - maybe we weren't. My boss was a kind-hearted man, very generous by nature, and I'm sure absolutely intended no harm.

But I fully believe that if they wouldn't have given free popcorn to a typical customer, they shouldn't have been giving it to Howard, or any person with disabilities.

I'm not a mean-spirited person. I'm just a person that believes that we need to look at adults with disabilities as *adults* first and foremost - not children who need a treat when we see them, or who get to never grow up because of their disabilities...but fully-grown people who get to participate in the community as fully-grown people.  Will some of them need some support to do this?  Of course. But they are still adults, with adult rights and responsibilities...like paying for snacks at the movie theatre.

We do them a disservice to people with disabilities when we take these opportunities to be everything they can be away from them. No one wants to be a child forever.







Monday, 18 July 2011

Dating and Disabilities

Every now and then I get asked about how having disabilities has affected my dating life.

Dating with Disabilities can be Exhausting


Truth is, I haven't had much of a dating life since the stroke. It took me a long time to get to the point where I had enough energy to even consider dating. Then, living in a small town where most of the young men my age are either already involved in relationships or married, there often doesn't seem to be a lot of options for dating. I date from time to time, but it hasn't resulted in anything serious yet, and the dates are few and far between

I tried online dating and met a couple of very nice men that unfortunately lived too far away to keep the relationship going for long. I'm not sorry I tried it; there were good times, and it was worth investigating.

The Online Dilemma


However. The world of online dating *is* fraught with the perils that you've heard about, ladies (and gentlemen). People lie; some people are perverts; some people are insultingly narrow with their criteria of who they will and won't date. It can be demoralizing. I made some good friends on a dating advice board associated with one of the sites, which made the whole thing worth it. It was on this site but that I became aware of a dilemma unique to online daters with disabilities:

When do you disclose that you have disabilities?

Do you do it right off the bat and take the risk that the other person will reject you because of it? Do you let it ride for a bit and then bring it up? Do you not bring it up at all until the first meeting?

I was surprised to read that the daters without disabilities sometimes have very strong views on this subject. Some have had someone show up on a first date that hasn't previously mentioned a physical disability and have felt negative emotions, ranging from annoyance that they weren't prepared for the shock of an obvious physical disability to feeling terribly deceived. One woman took it very personally; she had found herself, in phone conversations with her match, feeling badly about herself because he sounded like he had his life much more together than she did hers, and then she discovered on their first date that he was missing one hand. It made her very angry, because she felt that he had misrepresented how good his life was, and she resented that he'd made her feel badly about hers.

I tried to follow her logic, but couldn't. I was fairly new to online dating at the time, and thought, "Am I going to encounter this kind of bizarre thinking?" I was a little concerned.

You Decide When the Time to Disclose is Right


But I'd already decided by that time to bring up my disabilities fairly early in the dialogue anyway. Most of my matches were sounding like athletes, and my weak side definitely cuts down on my athletics. There are lots of ways to adapt sports, and I'm willing to try anything once, but I'm not "play to win". It seemed only fair to let athletic matches know this from the very beginning.

Besides, my disabilities are a part of who I am. They're not all of who I am. But they're a part, definitely. It doesn't make sense not to talk about them.

Bottom line, I think that online daters with disabilities should disclose when it's comfortable for them to do so. It's worked for me. And I'm happy to say that all the men that I've dated since acquiring my disabilities have not expressed at all that they've been a problem.

The Importance of Attitude


But I think that's a function of my attitude toward my disabilities as well. If I don't act like they're a big deal, other people are less likely to act like they're a big deal.

Again, that's something that took me a while to learn. But it's worth trying to learn to do about whatever it is about yourself that bothers you.

It's interesting to me that I'm now more self-conscious about my weight than my disabilities, especially when it comes to dating. But that's another story...
---

Oh! By the way...my blog is now listed at http://disability.alltop.com/. This means much more awareness for my posts, and I'm really excited that they chose to include me on the page. Go check it out!

Sunday, 17 July 2011

My Brain AVM Story: "Confront Me If I Don't Ask For Help"

The title of this post is from a movie called "28 Days". Sandra Bullock, sentenced to 28 days in an alcohol rehabilitation centre after causing a car accident at her sister's wedding, is forced to wear a sign saying "Confront Me if I Don't Ask for Help" on a sign around her neck as penance for breaking the rules. There were days after my brain AVM surgery and the stroke when I probably should have worn a similar sign.

I had a very hard time learning to ask for help after the stroke. And an even harder time learning to accept it.

"I'm Fine. Thank You, Though."


The word “help” hadn’t come easily for me for a long time. I’d always been fairly private about my affairs, and I’d already lived on my own for a year in university before moving out to BC. I was used to making my own decisions and coming up with my own plans for handling my problems. However, after my brain AVM surgery and stroke, for a couple of years, I was much more dependent on people than I liked. I didn’t have a driver’s license anymore, and in my small town there was no public transportation, so I was basically reliant on my father or taxis for transportation. I got tired extremely quickly, and had trouble doing even the most basic things without assistance. We won’t even get into the limitations imposed on me when I used my wheelchair in public.

When I was recovered enough to move out on my own, I was close enough to town to walk when the weather was nice and the sidewalks were clear (in winter, snow and ice still sometimes make walking unsafe for me). However, even on good walking days, I usually take a cab if I’ve been shopping and have groceries to carry. I can carry a week’s worth of groceries in plastic bags with the handles over my wrist on my good arm, roll a 12-can case of pop up my body and carry it under my elbow on my weak arm, and still get into my apartment, but I can’t pull that off for any sort of distance; sometimes walking home is out of the question.

Watching me carry that many groceries even the short distance from the cab to my apartment building makes the cab drivers, who all know me by now, awfully nervous. So much so that some of them, while they respected my refusal of their offer to help for a while, don’t listen anymore; they’re up and grabbing my bags before I have a chance to object. (Note: There are *very* few people from whom I’ll put up with that sort of thing. There’s only one cab company in town and the drivers see me enough to know when I say, “I’m fine, I just need to get organized” as I drop three things on the ground, I’m probably just brave-facing it and bull-shitting them a bit...so some of them just stopped paying attention to me. It’s actually kind of refreshing when people are willing to call me on unreasonable behaviour in this way.)

"She *Can* be Taught!"


So…it’s taken me a long time to learn that asking for help, or accepting help when it’s offered, is not a sign of weakness or dependency. One of my friends    says, when I’ve gotten too  stubborn about doing things  “on my own”: “I *know* that  you’re fine doing it by  yourself. But won’t it be easier  if you just let me help?” I think  it’s to my credit that I snarl at  them a little less than I used to  after hearing that.

Nick (name changed) was actually the first  person who brought this issue  up with me. We’d both been  away from Ottawa Rehab Centre for the weekend for visits with family, and we’d both gone to the Chapters book store in the area. I talked about how I’d tried really hard to do as much as I could on my own, even though it was harder to reach the higher shelves in my wheelchair. Nick said had shrugged and said that he’d asked for help when he needed it, and had much more energy to enjoy the book and the time with his family.

Man, I hated it when Nick was right.

Thursday, 14 July 2011

I'm Not Sick

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


Disability: Illness to be "Cured"?


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

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

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

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

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

No, I don’t, I thought.


Today...


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

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

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


Not Sick


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

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

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

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


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

Tuesday, 12 July 2011

Focus on Our Commonalities, Not Our Differences

I think that one of the most important things that I've learned from working with people with an intellectual disability is that everything works better when I focus on the commonalities between us instead of the differences.

"Disability" doesn't mean "Different"


The importance of this became startlingly clear to me the first time I met a woman with an intellectual disability, through a volunteer program with an agency. We'd been introduced because the coordinator thought that we might have enough in common to be friends. But I was a teenager with almost no experience in the field, and she was very shy. As we sat in her apartment staring at each other, I couldn't think at all how this was going to work.

So I suggested that we go for a walk. We ended up at a coffee shop. When we both ordered Diet Coke to drink, we both smiled, and suddenly a friendship was born.

Over fifteen years later, we are still friends. We have spent holidays together, traveled together, and seen each other through health crises. She is like family to me. We have very different backgrounds, but it doesn't matter - the things that we have in common are the base for a friendship that has been very fulfilling for both of us. We both love music, theatre and dance. We both like to sing, and go out to eat, and travel to new places.

Grateful


It's really easy to focus on our differences, especially when one person has a disability that the other doesn't...but it can be so much more fulfilling to focus on the thing that we have in common. It's a really good lesson for interacting with anyone, really. My mom said to me once, "I'm so glad that you and Bonnie are friends - because it brought her into our lives too." It was one of the nicest thing my mom has ever said to me, and I'm so grateful for how welcome my family has made Bonnie feel in our home. I know that she appreciates it.

I'm really grateful that I had to the chance to work with people with a variety of disabilities before I acquired my own. I think that my experiences helped to come to terms with living in society as a person with disabilities a lot more quickly than I would have otherwise.

Thursday, 7 July 2011

My Brain AVM Story: Dark Humour

Sometimes dark humour helps...
I mentioned elsewhere how my sense of humour is kind of dark. I come by that honestly, and it came in handy when I was in stroke rehabilitation, after my brain AVM surgery.

All names are changed in this entry.

Summer in Penatanguishene General Hospital


At PGH, I was the youngest person there by at least 30 years for all but 3 of the weeks that I spent there. No one had heard of a brain AVM; some residents had had a stroke, but most were recovering from hip and knee replacement surgeries. The only real contact I had with young people was when one of the nurses who was just a bit older than me took me on outings with her friends (wheelchair and all); we went to the movies, to her place to hang out with her friends, and even to see her husband play in his band. Dad came to take me home every weekend, but it was really nice to get out with young people. I wouldn’t have had much of a summer without Callie and the generosity of her family and friends.

Arts and Crafts in Ottawa Rehabilitation Centre


At ORC, the demographics were different. Many more people were closer to my age; Helene and Tracey were both younger than I was. Several people were getting physiotherapy and occupational therapy after vehicular accidents. Many people, some younger than I, were there to recover from stroke, brain injury, or other related neurological conditions. Again, no one had heard of a brain AVM.

A group of us ate meals in the cafeteria and hung out together when we could. One night we all got bored and decided that we’d go to the Arts and Craft session that was being run by volunteers. They were doing Christmas centrepieces that night, making us glue little bits of Christmas paraphernalia to a rolled-up scroll with a ribbon on it.

Angela (my best friend at Rehabilitation Centre #2) looked over at Nick halfway through. Nick was in his mid-thirties, and trying to regain use of his dominant arm. The rest of us had been diplomatically silent about the fact that he’d abandoned the instruction sheet and was just gluing tinsel and Christmas cut-outs and glitter randomly all over his centrepiece. But Angela's stoke had made her pretty blunt.

“Nick,” she said. “That is God-awful. Seriously, what are you doing?”

“It’s horrendous, isn’t it?” said Nick, shaking green sparkles onto a line of glue. “I’m going to give it to my mother. And if she doesn’t put it out every year, I’m going to act all huffy and insulted that she didn’t put out the decoration that I made just for her in rehab.” He grinned widely.

“You’re a terrible son,” I said.

“Oh, most definitely. Someone pass the stickers, please.”

Cry or Scream


We found ways to make ORC fun, but by definition it wasn’t really a fun place. Some of the people were recovering from some pretty devastating stuff. None of it was joking material, but there were quite a few that joked anyway. Not all the time. But I saw that dark humour that I’d used (still use) to make some situations in my life easier to deal with.

There’s a beautiful sequence from the television show “M.A.S.H”., where Hawkeye explains that if it seems like he’s cracking a joke every time he opens his mouth, it’s because he’s trying to keep from screaming. That quote is never very far from my mind. I wonder how many people are actually doing this on a daily basis, whether they realize it or not.

Government Fun(ding)


I've been reading enough about what's happening in the United States to know that it sounds like what's happening in Canada (or at least my part of Canada) right now: Government funding (or lack of it) is affecting what kind of services are being offered to people with intellectual disabilities. A new way of looking at funding is on the way: individualized funding.

From Agency Funding to Individualized Funding


Right now there's a conception that we have to rely on agencies to support people with disabilities. I've talked about this, and about how I think that there will always be a place for agency supports.

However, there's also something to be said for the idea of giving people the choice of where they'd like to get services. The idea behind individualized funding is that government funding goes directly to the person with the intellectual disability. If he needs a particular service, he may choose to purchase them from one agency that offers them, or he may choose to use his money to purchase those same services from another agency. Or another person might choose to purchase one day of support services from an agency and use the rest of the money on an independent worker to assist her to do community and employment-related activities. Or another person may choose to use his money entirely on independent workers and none at all on agency services.

This is the direction in which funding for people with intellectual disabilities is heading in a number of countries. Some have already implemented individualized funding, and find that it works wonderfully.

Change is coming for the field of developmental services. I'm looking forward to seeing what comes next.

Wednesday, 6 July 2011

Wishes and Dreams


I've had a lot of conversations with youth with intellectual disabilities about what kinds of jobs they’d eventually like to have.

Many of them have no idea. They’re used to other people making their decisions for them, and they didn’t know that they even could get a job, let alone have a say in what job they wanted to have.

Some of them have a vague idea. They’d like to get a job that pays in a job in a field that’s interesting to them. A boy that really liked cars wanted to be a mechanic; another wanted to work with animals; a girl wanted to travel and take pictures of the places she’d been.

Some have *plans*: college, a trade, working at a specific place, missionary work. One young woman wanted to be a Hollywood actress.

No matter how unlikely it’s seemed that a person with disabilities may reach a goal, I never say, “No, that’s not something you’ll be able to do.” It’s not my place. Everyone I know was allowed to have dreams when they were growing up. People with disabilities are allowed to have them too.

The Meaning of "Support"


My parents loved the theatre (my dad still does), and took whatever opportunity they could to expose my sister and I to a variety of theatre experiences. When I was ten, long before I acquired my disabilities, we went to see the National Ballet’s production of “The Nutcracker”. Already a dance lover, my heart was won over by the fact that the children on the stage were students at the National Ballet School. I wrote to NBS to get audition information, and for two years in a row my family took me to the Ottawa auditions.

I didn’t get in, of course. I was a chubby pre-teen who’d never have a dancer’s body (or the stamina or discipline required to do ballet at NBS) no matter how hard I tried. And I suspect that my parents knew this. But they covered the costs of the auditions and two family weekends in Ottawa, never once suggesting that it was a waste of their time and money, and were the soft place to fall when I was rejected both times. And they urged me to continue with dance in spite of my disappointment, because it was something I enjoyed.

Readjusting Expectations


Few of the youth with the big plans, as far as I know, have gone on to live their dreams. Some community colleges do have programs especially for people with intellectual disabilities, but they’re mostly focused on life skills and basic academics; the young people start to see, once they investigate what they’d need academically to do the career programs, that they’d find the work very, very challenging. The young woman who wanted to be a Hollywood actress backed off on it once we did some investigation together and she realized just what would be involved.
“But,” I said to her. “It doesn’t mean that you couldn’t try to work in video rental store when you’re done school, does it? Where you’d be around movies all the time and you could maybe even suggest movies to customers if they asked?”

She liked that idea. When the young man discovered that he couldn’t volunteer in a vet’s office because of liability issues, he started a dog-walking business. And plenty of people who never considered working go on to get jobs in the community where the work may not be glamourous, but it's interesting for them. And they get paid to do it, because someone’s got to do it.

Learning to Live with Disappointment


And of course people are disappointed at first when they realize that their dream job is beyond their reach, just as I was when I realized that my dream of being a ballerina was beyond mine. But everyone has to learn to deal with disappointment, and learn to find a way to move on. That’s a part of life, both for people with disabilities and without.

Some people see me as setting people up for failure when I don’t tell them from the outset that they won’t be able to do something. But I refuse to tell people that they’re not allowed to dream.

Tuesday, 5 July 2011

Disabilities and Pity

"Disabilities" and "pity" do not play well together.

Where Everybody Knows Your Name


I grew up in a very small community, and my father still lives there. Because he held a high-profile job for many years before he retired, and my mother taught, and the entire family was active in our church and community, we were fairly well-known. So it got around quickly when I returned to Ontario after having my first stroke that something weird had happened in my family. My father called me from work the first day I was home.

“Just checking that you’re still there,” he said.

“Why wouldn’t I be here?” I said, wary.

“Because since I’ve come into work I’ve heard that you’re still in the hospital in BC, that you’re dead in BC, that you died in your own arms on the way back to Ontario…I just didn’t know what to think.”

“The dog can confirm that I’m here, if you like.”

“That’s fine, I believe you.”

The same sort of thing happened after my surgery, when word got around that I’d had another, more serious stoke and now had some fairly serious disabilities. People drove the couple of hours to visit me, only to have me fall asleep after half an hour. Dad would often say during a visit, “So-and-so from xxxxx church wants to put you on their prayer chain, and I said I’d ask if that was okay with you.”

I’d not been a Christian for a couple of years at that point, but figured I could use all the help I could get. “Sure.  Please thank them for me.”

When I finally returned home from Ottawa Rehabilitation Centre in December, 2000,  I was walking with a cane for short distances but still relying a lot on my wheelchair. I was avoiding my inevitable debut in the chair in my town, though, and at the time I wasn’t sure why. I used the chair on field trips in rehab all the time and it didn’t bother me a bit. It really didn’t even bother me to use it when I joined the *very* early morning walking club that did rounds of the school before any students or teachers got there; Dad rolled me in from the car, over the snow and ice in the parking lot, I walked my quarter-mile and collapsed into it, and he rolled me back out to the car. No big deal.

One day, however, in a city mall in a city a couple of hours away city with Dad and Rachel, we ran into a family that lived not that far away from us. I *now* knew the source of my reluctance about using the chair in my town.

The looks of pity in their eyes made me want to throw up.

Disabilities and Pity


They were trying to be positive and tell me how great I looked, but their eyes gave them away. I couldn’t wait to get away from them. When it looked like they intended to draw the conversation out, I asked Rachel if she could go with me to the washroom, and I ranted to her in there about “pity eyes”.

I’ve never used the chair in my town again, and I breathed a sigh of relief when I could manage excursions to a mall without it. I think that day marked the true beginning of my determination not just to regain enough function  to manage, but to become as functional as possible. My mom’s stubbornness really set in.

Don’t tell me I can’t do something because of my disabilities, because I’ll try all the harder, just to prove that I can.

Don’t assume that because something’s out of reach because of my disabilities, I won’t try, just to see how far I can get. Failure doesn’t scare me as much as it used to.

Don’t pity me. I’m pretty content, all things considered.

Sunday, 3 July 2011

Disabilities Work and Abortion: A Philosophical Question

Every now and then...not often anymore, but every now and then…a philosophical question related to the work I do with people with disabilities comes up, and I simply don’t have an answer. I’m going to talk about a question today that I didn’t know the answer to until I wrote this post. I started writing this post on Saturday.
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A Tough Question for Me As a Worker in the Disabilities Field


 This post is a difficult one for me. I’d had the question that I want to discuss in  mind for a long time, but kept it on the edges; letting it in any further had to  potential to shake things up for me too much. But when I saw it being  discussed in another blog about disabilities,   (http://www.blogger.com/comment.g?blogID=22817259&postID=8744946647209332880)  and finally knew I  wasn’t the only one asking it, I began to think about it a little bit.

And then, last night’s “Law and Order: SVU” was about a woman in a coma who was found to be pregnant.

I won’t ruin the ending for those who haven’t seen it, but I *will* say that the young woman wasn’t raped, but artificially inseminated, and that her doctor attempted to abort the unborn child (using that terminology for a reason) without anyone’s consent. I found both acts unconscionable, and grim reminders of the days in Canada and the US when they used to sterilize women with intellectual disabilities without their consent (and a reminder that this still goes on in some countries).

But I didn’t think much about the unborn child that was nearly aborted.

No Easy Answer


I’ve been pro-choice since I was about seventeen years old, and those convictions have grown stronger with each year. And I absolutely don’t know how to explain why I’d put the rights of a woman on life support in a coma over the rights of an unborn child (normally I’d say “foetus”, but I’m deliberately trying to use a phrase that more evokes “personhood” for the purpose of this exercise.)

I don’t know why, if I had to choose between fighting for the rights of a person with profound disabilities who couldn't live without direct support to meet his or her basic needs and doesn’t communicate in any traditional way, and the rights of an unborn child (who is essentially in the same boat) I’d choose to fight for the former first.

I don’t know why the idea of an unborn child being aborted because it has disabilities saddens me, but I’ll still defend the mother’s right to do so until…probably the day I die.

Some Guesses


I think it all comes down to two things: 1) I don’t believe that babies are babies until they’re out of the womb. I didn’t realize that I believed this until I wrote this post, and it’s a surprise even to me to discover this about myself. 2) I chose a long time ago that I wanted to work with people with disabilities and see if I could make a difference in the world that way. Whether it’s because of aptitude, experience, or a combination of both, in a given situation my mind zeros in on “What are the disability-related issues and what needs to be done?”

I see the other issues too, but I give what I can where I’m best equipped to give it. I think that’s really all we can ask of each other.

This feels unfinished, but I’m not sure what else to say. Thanks for listening.