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Tuesday, 30 August 2011

My AVM Story: Counting My Blessings

Not Good with Pain!

For almost three weeks now, I’ve a toothache.

It started off as a twinge, and then, the Wednesday night before last, all hell broke loose. I didn’t know that teeth could cause that kind of pain. I took the extra strength generic ibuprofen that I had in the house, but it didn’t make a dent in it. I cried. I called a friend to distract me. I called my dentist the next morning, but he couldn’t see me until Monday.

I lasted until Saturday night before I went to the ER looking for meds.  They gave me *lovely sigh* something with codeine in it.  Which worked wonderfully, but made me feel like I was going to have a seizure every time I took it. My conversation with my dental hygienist on Monday, however, shows how much I value good pain relief:

Me:  The codeine that they they gave me at the hospital makes me feel like I'm going to have a seizure, so I've been a bit unsteady.

Jessica: Seizure!  No more codeine for you!  He'll write you a prescription for something without codeine for you.

Me: (Pause) But the codeine works *so* well...

My dentist established that I need a root canal and prescribed me something called Naproxen (which doesn't work as well as the stuff with codeine in it, but I've survived). But all of this has made me think about how I would have handled my health issues if I’d had to deal with pain on top of everything.

So What if There *Had* Been Pain?

The first stroke, the one that I had in British Columbia, came with a terrible headache, and pain that started in my neck and moved down my body.  The initial pain was definitely the worst in my head that I'd ever experienced, and the worst generally that I could remember. It took two weeks before both kinds of pain completely went away. Apart from that, and some severe headaches right after the brain surgery (which one would expect), I haven’t experienced any pain. Sometimes one of plusses of stroke is that you don't experience pain. I fell on my left hand two years ago, went to the hospital for X-rays a couple of days later because my thumb hurt, and found out that I'd broken my little finger and didn't realize it

(As you can imagine, having that little sensation in a finger or limb can also be very dangerous. I've heard horror stories about people with very little sensation in their affected hand or limb setting it down on a hot burner, or cutting it badly, and not realizing it until some other signal of skin damage made it obvious. Because people are less aware of a side that's been affected by stroke, they tend to "neglect" it, or not pay attention to things like where a limb ends up resting.)

But I digress.  My stokes didn't inherently cause any long-term pain, and I didn't realize until much later that I'd dodged a bullet.  A young man named Martin showed me how much worse it could have been.

Post-Stroke Pain

Martin was also a stroke survivor.  Just a bit older than me, he'd had a stroke after being in a terrible car accident. Among many other health issues unrelated to the stroke, he had something called “post-stroke pain”, or “neurogenic pain”. The brain damage caused by his particular stroke caused his brain to feel pain when there was nothing there to cause it. He didn't talk about it much, but he once told me that it was excruciating. His mother told me later his post-stroke pain felt like his fingernails were being ripped out for several hours a day, every day.

I don’t know how I would deal with that now. I certainly don’t know how I would have dealt with it as I was earlier stages in recovery.

Counting My Blessings

I know for sure that I would have found it much, much more difficult to stay positive and to get on with the work of recovery if I’d been dealing with any sort of chronic physical pain. Emotional pain – I can work around that (well, up to a point, but it’s got to be pretty intense before it interferes with my functioning). It's been my experience that physical pain gets much more in-your-face much more quickly, and I’ve got no end of admiration for people who seem to thrive in spite of it.

I know that I couldn’t do it.

So I count my blessings. A lot of people out there have got it a lot worse than I ever did.

For more information about post-stroke pain:  http://www.emiliemcmahon.ca/englishmrp.html

Monday, 29 August 2011

To NVCI or not to NVCI, Part 2

Just to remind people...

DISCLAIMER:  I'm not in any way affiliated with the Crisis Prevention Institute or any of the training that it offers. I obviously have some strong opinions about the CPI's Non-Violent Crisis Intervention (NVCI) training, but they are my own.

NVCI Holds


I'd like to continue the discussion of NVCI training that I started yesterday by talking about NVCI holds, or bodily restraints. You've likely seen variations on them in movies, but the NVCI holds are generally less dramatic. They are used are used as a last resort, constantly monitoring the person in the hold, and only until the person has indicated that they've regained physical control.

I’ve never had to use an NVCI hold on anybody. I was lucky that I didn’t have to in any context before my stroke, and after my stroke using NVCI holds wasn't an option for me. Like the teacher in the Facebook conversation that I talked about in yesterday's post, I really hope that, even if I got to a point where I could safely use a NVCI hold, I never have to.

NVCI Holds and Inaccurate Connotations


When I hear the word ”hold” in the context that we learn in NVCI training, I think “restraint”, and I think of being tied to the bed in the hospital (See the blog entries entitled "Finger Spelling" and "Finger Spelling, Part 2" for the story about my restraint experiences). The NVCI holds are bodily, with a focus on comfort and safety for the person, but they are still restraints, and they still conjure up the image of restraint for me.

But I was not a person who should have been put in a restraint, according to the NVCI guidelines around restraint.I wasn’t out of control. I wasn’t at risk of putting myself or others at harm. When a person has genuinely reached that stage, when they’re no longer in control of their actions and they’re at risk of putting themselves or other people in danger (and agencies should have criteria even beyond that for whether or not use of a NVCI hold or any other restraint is appropriate in a given situation), it’s not a nice feeling for the person. No one likes being at that point. A NVCI hold, done properly, (which is physically safe for both the person or people doing it and the person who’s out of control) can bring about a measure of security that the out-of-control person needs to become calm. But NVCI holds are restraints, so they need to be used as last resorts.

And they need to be done safely, because the person or people doing doing the hold can also be hurt if it's done the wrong way.

I remember a situation several years ago in an airport where I believe a man died after being tasered by police. It astounds me that despite having the capacity through NVCI training and CPI-sanctioned means to safely and effectively restrain (and move an individual in restraint), more agencies don’t opt to make that part of the protocol. If the police were close enough to taser, they were close enough to do a safe, effective restraint until, if necessary, a chemical restraint was made available. The man could have lived.

No one wants to see people restrained. But if it must be done, as the last resort, agencies should take advantage of training that will ensure that staff can do it safely.

To sum up:

1) Agencies should have safety for both clients and staff as a priority in all matters, including those involving potential violence from any source.

2) NVCI is much more than the holds.

3) The verbal and non-verbal NVCI intervention strategies are good for anyone to learn, should they get the chance.

4) There’s no reason why staff working in sectors where clients take unpredictable action shouldn’t be taught the means to safely, for them and for clients, deflect any violence aimed at them.

5) NVCI Holds should be a last resort and have agency policy surrounding their administration, but can be done safely and with a minimum of trauma for everyone when done according to NCVI guidelines.

Obviously this is something about which I have strong feelings. This is another area where we have to balance respecting rights, responsibilities, and needs of the people we support, and that brings out strong feelings with anyone in this field.

More about CPI and NVCI:  http://www.crisisprevention.com/

Sunday, 28 August 2011

To NVCI or not to NVCI...

Tools for defusing anxiety and frustration...
I caught a Facebook conversation recently between two friends about the Crisis Prevention Institute’s Non-Violent Crisis Intervention training, or NVCI training (which, for those of you who don’t know, is training in de-escalating potentially…I’m going to say violent, because it can get to that point, with the understanding that I’m reluctant to because I don’t want to contribute to the idea that certain groups are inherently violent because of a diagnosis...situations in a way that’s safe for everyone.)

DISCLAIMER: I’m not involved with the Crisis Prevention Institute in any way, besides having taken NVCI training in the past. I don’t speak for them. The opinions in this blog post (and the next one) are my own.

There.  Now that we’ve got that out of the way. :)

Philosophically Against NVCI training

The school at which I received my training to work with people with intellectual and/or developmental disabilities wouldn’t do NVCI training with us. They may have changed their stance on it now that more and more agencies require it. But when I was a student, we were free to pursue the certification outside of school, but it wasn’t a training that they’d offer in-class due to the section on “holds” (physical restraint). Their philosophy was that they were against physical restraint in all circumstances, so they wouldn’t offer the training as part of the curriculum.  One of the friends involved in the Facebook discussion that I mentioned earlier was lamenting that teachers now have to have NVCI training and hoped that she’d never have to use a “hold” on a child. While I do understand both lines of thinking, I don’t know if they’re realistic for support workers today.

Being Pragmatic - Use the Tools


First, I would hope that any agency or government institution (a school or a hospital, for example) that does NVCI training with staff hopes too that the holds won’t ever be necessary. If staff has to use a hold on a client, then the most important parts of NVCI training, the parts that make up the bulk of the training, have failed, and a situation has gotten much more out of hand than it needed to be. Most of NVCI training is about learning to defuse anxiety in a person or a situation the moment it    manifests. Trainers teach  course participants  verbal and nonverbal  tools to de-escalate  situations where it looks  like a person has the  potential to behave in a  violent manner, before  the behaviour itself  begins. These strategies  are the most important  part of the course, and  I’ve used them even off of  the job site, just to  reduce another person’s  anxiety or frustration – a  lot of it is common sense  about working with people, not just people whose anxiety might move their behaviour to a level that becomes a concern.

However, when I’ve taken the NVCI training, it’s been in positions where I’ve been required to work with people who, for a variety of reasons, *are* prone to anxiety and frustration and who sometimes behave unpredictably. Sometimes it’s been a pattern that anxiety or frustration mounts because they have difficulty communicating and making their wishes known, or letting people know that something’s wrong.  Sometimes it’s been because of medical or hormonal problems. Sometimes it’s been because of mental conditions. And while I’ve been lucky enough this far in my career not to have been the object of violence, I know that it does happen.

Using What Keeps Everyone Safe, Given Certain Realities

My school and I disagreed vehemently on this, but I saw (still see) no reason why workers in the developmental services field should be required to absorb violence from people that they support. It may be on the worker that he or she didn’t catch a situation soon enough or do a good enough job of defusing it, but I’m not going to begrudge *anyone* instruction on how to safely (for both parties) deflect an assault because he or she is still learning good verbal/nonverbal conflict de-escalation skills.

The key there being *safety*. NVCI violence deflection skills, if they absolutely must be used (assuming they are used properly) keep both people safe. And for something like this, agencies should strive to make the safe way to deal with violence, for both people, the instinctive way of dealing with it.

More on this in the next post.

For more information on CPI and NVCI: http://www.crisisprevention.com/Resources/Knowledge-Base

Wednesday, 24 August 2011

Internet and Youth with Intellectual Disabilities

This post goes out especially to parents of teens with intellectual disabilities.

A Whole New World: Facebook

This post came to mind because I'm doing a project on social media sites such as Facebook and Myspace for an agency right now, but I've long had concerns about these sites when it comes to users with intellectual disabilities. I've worked with youth with mild intellectual disabilities who have profiles on sites like Facebook and MySpace, and some of them manage it quite well: they know what information to make public and not to make public, they know all the people on their "friends list", and they've had someone look at their profile and make sure that their security settings are such that only authorized people can see what they post.

More often, however, I was dismayed by what I've seen when I searched for (and easily found) their profiles on Facebook (I can't really talk about MySpace, as I've never used it, but I'd imagine that the situation isn't much different there). For most youth that ended up on Facebook, I could see what they and others had written on their "wall" without being a "friend", indicating lax security settings. Some include personal information on their profiles. And Facebook, as a general social force, causes no end of trouble, because this demographic doesn't generally have 1) the discernment skills to be able to determine, "I should not be talking to this person" and 2) sufficient knowledge and skills to get out of a situation that they can't can't handle when their discernment skills let them down.

Strategy and Preparation


Please don't take that to mean that I don't believe there's a place for people with intellectual disabilities on Facebook.  I think that all social media applications present a marvelous opportunity for people with all sorts of disabilities to network, educate, and make new friends (see "My Name is Sarah" in the blogroll to read a delightful blog by a young woman with Down's Syndrome, assisted by her mother). But safety has to be considered. I'm of the parenting school that believes that it's okay to insist that you have your teen's Facebook password, whether they have disabilities or not (up until 18, and I'd prefer that they agree to let me have it longer than that if they have an intellectual disability, but I can't force them), but you'll have to decide what you feel about that.

If you have a young person with an intellectual disability in your life who wants to be involved with Facebook, please do the following for their sake:

  1. If he's in school, get in touch with his teachers. Find out what he's learning about the internet and services like Facebook. Is he being taught about Internet safety? Is it being taught once and then the class moves on (information this important needs repetition and reminders).  What kind of internet services are the students signing up for in computer classes? Are the students blocked from accessing any services from school?

  2. Talk to your teen. Why does she want a Facebook account? Does she know what it means to use it responsibly?

  3.  If you don't feel comfortable having his password, does he know that he should come to you if he comes across something that he can't handle?

  4. Does she know about the Facebook features that she can use to deal with conflict with others?

Heck, have these conversations with *all* your children.  Social media is good for a lot of stuff...but it's best to make sure that everyone is using it safely.


Have any parents of kids with disabilities out there had some experience, good or bad, with the internet?  What's your number one concern? What's your number one suggestion?  Someday I'd like to write some sort of curriculum that agencies could use to educate people with intellectual disabilities about internet safety, so I'm interested in hearing about peoples' experiences...

Tuesday, 23 August 2011

Engineering Your Future

Some people want it to be perfect.

The Shopping List

When I got involved with online dating, I also posted, for a time, on a dating advice site associated with one of the dating sites. *That* was an experience, for many reasons.

One of the more puzzling attitudes that I came across was the idea of the "preference", or set of standards that people had for a perfect partner.  Now, I have preferences: I like tall guys, I like guys whose politics are on the liberal side of the spectrum (to match my "bleeding heart" politics, as one guy I dated put it), and I like guys that, if don't enjoy, will at least tolerate my occasional foray into movies relying on dark and/or juvenile humour that women my age shouldn't find funny.

However, I've dated outside all of these preferences and had great relationships. There's a group of people in society who have preferences from which they simply won't deviate: If he's not tall enough or doesn't have enough hair, or she's not thin enough or doesn't conform enough to female gender roles, or he/she doesn't make enough money or has something in their history, like depression, that causes discomfort (pick any one of them; these seem to be the main "deal-breakers", if there are going to be any), it's not going to work. End of story.

Inevitably, in a thread where this was being discussed, I or someone would come along and point out that peoples' bodies change as they get older, people get fired from jobs or move on to new ones where they make not make as much, people get sick...circumstances just *change*, and if that preference that you predicated the entire relationship upon the other person having was once there and suddenly isn't, what do you do?  Building a relationship on something transitory just doesn't work.

But there was always a group of posters that didn't want to hear that.

You Can't Always Get What You Want


I was thinking about this the other day as I heard my sister  talk about how a couple she knew was progressing through through the process of adopting a baby through the Children's Aid Society. It's a long process involving reference checks from the police, family and friends, home visits from an adoption worker, parenting classes, and sometimes fostering for the CAS before becoming adoptive parents. Rachel''s friends were finally getting to the top of the list for becoming adoptive parents.

I asked if the process went faster if you were willing to take, say, a child with Down's Syndrome. Rachel said that it definitely did, but that her friends had specificed that they didn't want a child with disabilities.  Apparently most of the children looking for adoptive homes in her friends' area have Fetal Alcohol Syndrome.

On the one hand, I can understand not wanting to end up adopting a child with Fetal Alcohol Syndrome. FAS causes brain damage that not only leads to impulsiveness, diminished judgement, extreme mood swings, lack of self-discipline, and difficulty with social cues, but also causes physical damage to the eyes, ears, and teeth. A child will FAS will likely need interventions into adulthood to work and live independently, as symptoms often intensify with age. If a family is looking to adopt and doesn't feel that they can handle that, best to be honest and say it right from the beginning.

However, the other part of wants to say to these friends of my sister's, if I could: "You could get a perfectly healthy baby, take it home, have something happen somewhere down the line that causes a traumatic brain injury...and you've got a kid who's struggling with impulsiveness, diminished judgement, mood swings, lack of self-discipline, and difficulty with social cues."

"You might get a baby who ends up being on the autism spectrum...or mental health issues as a child or teen...or severe learning disorders..."

"Just because you said that you didn't want a baby with a disability...is no guarantee that you're not going to get one. I really, really hope you've thought about that."

And I'm sure that they have, because they're those kind of people.

But it still hurts a bit...most people who are adopting want a perfect baby.  Few people consider that the perfect baby *for* them might not actually be perfect.

If I'd had to be adopted, and they'd known that I'd had a ticking time bomb in my head...would anyone have adopted me?

For more information on FAS:  http://www.faslink.org/

A Perspective on Congenital Impairments

I don't have a whole lot of time today, but I thought I'd share this excellent commentary on how society looks at  disabilities that people are born with. It certainly gave me  some things to think about.

http://blobolobolob.blogspot.com/2011/08/disability-hierarchy-2-born-this-way.html

Have a great day. :)

Monday, 22 August 2011

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 my 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.

Thursday, 18 August 2011

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?”

“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.

Tuesday, 16 August 2011

Democracy in Action

Here in Ontario, we're having a provincial election in October. Fun stuff.  The Liberal Party is currently in power in Ontario and in my riding. Tonight, I got a call from my Member of Parliament's office, inviting me to stay on the line and participate in a "virtual town hall meeting" with him.

Ah, the Wonders of Technology


It was really quite something. When I joined, there were apparently 2400 other people also participating on their phones. The Minister of the Environment dialed in to speak about energy issues. People were able to indicate by pressing a combination of keys on a touch tone phone that they wished to asked the  Member of Parliament a question, and he was answering peoples' questions live. I've never seen anything like it done.

I was emailing with a friend as I listened. I typed to her, "I'd like to grill him on disability supports, but he's not going to know anything about it." Send.

"Do it! Do it!" she sent back.

I considered it for a moment, as my MP talked about energy issues. Then I typed back, "Why not?", and pushed the buttons on my phone to indicate that I wanted to ask a question. I wanted to ask specifically about the funding freeze on two Ontario programs: Special Services at Home, and Passports.

Intellectual Disabilities: Special Services at Home


Special Services at Home (SSAH) is funding for families with a young person with intellectual disabilities that allows them to purchase respite services. They can use it to pay to send the young person to summer camp, or to hire a respite worker to take the young person for periodic overnights, or to pay for the young person to go to a respite house every few weekends. The money can also be used to implement a program where the young person can work toward personal development goals.  I always suggested that families apply for SSAH because even in families where the young person doesn't have intellectual disabilities, parents need a break from the kid and the kid needs a break from the parents!

When I first started assisting families to apply for SSAH, there was no waiting list. No one ever got a whole lot of money, but at that point everyone who applied was getting *some*. Around 2008, that changed. Now, not only do no new applicants get SSAH money, there is a waitlist of 7000 families.

Families without this money go into crisis. I've seen it happen.

And then there's Passports funding.

Intellectual Disabilities: Passports Funding


Passports (which has nothing to do with a actual "passport", but is rather used in the context of a "passport" to adult life) funding was intended for students with intellectual disabilities just leaving school. It was to be used to implement a plan for community engagement - if the young person had a list of 5 things that they wanted to do in the community after school ended, Passports money could be used to help fund it. Passports money could be used to pay for a wide variety of things, from a monthly bus pass and a digital camera so that a young person can join a photography club, to a one-to-one worker who will help a young person prepare for their goal of living independently.

Passports money still gets distributed to new applicants in small amounts, but there are over 4000 people on the waitlist. For families that suddenly find a young adult with intellectual disabilities at home full-time after having them at school for years, Passports money could be what alleviates a crisis situation.

Someone Else's Turn to Give a Hard Answer


It's hard to say to families, "We'll apply for SSAH and Passports, because the government needs to know that there's a real need for these things; but don't pin your hopes on them, because very few families get any funding anymore."  I imagine that it's even harder to be the family that has to hear that.

So, my question to my MP was going to be: "You keep talking about how we have to give the children and youth of Ontario a fighting chance. If the Liberals are re-elected, when will they decide to give the children and youth of Ontario with intellectual disabilities a fighting chance, and give their families some support, and lift the funding freeze on SSAH and Passports?"

Unfortunately, the town hall meeting ended before I got a chance to speak. But I got a chance to ask my question into an answering machine.

We'll see if I get a response. :P

Update:  My MP himself called yesterday morning to answer my question. He needed a bit of information on the programs in question, but was able to talk about them in the wider context of government cuts that have been made over the past couple of years. I didn't get the impression at all that he was trying to dodge my questions, and he was quite open about the fact that he didn't know the specifics of what I was talking about but was willing to look into it. I was quite impressed that he even called back, and with his answer, considering that I really wasn't expecting him to know much about it.

Monday, 15 August 2011

Keeping up to...whomever...

What is the Social Clock?
I’ve read a couple of posts in the disabilities blogosphere this week about the difficulties that come from people with physical disabilities comparing ourselves to others. (This isn’t just the case for people with disabilities, by the way. It’s not generally a good practice for anyone.)

The "People Are Worse off Than Me" Trap


The blogs that I read talked about what happens when people with physical disabilities compare themselves to people worse off than themselves. The Smart-Ass Cripple (one of my favourite bloggers) talks about how his “Prayer of Self-Belittlement” helps him deal with the longing to be out of his room, up on a mountain-top in his chair, by shaming him into remembering that there are plenty of people who have it a lot worse than he does. Ruth Madison (a wonderful fiction writer, by the way) talked about the major pitfall in this way of thinking: when you start thinking, “At least I don’t have it as bad as that person”, you bring your awareness to the fact that there’s likely someone thinking that about *you*…and what do you do with that?

I sometimes tell people that I’m grateful that things turned out the way they did because lots of people have gone through the same surgery and come out a lot worse, but I don’t feel like it’s something that gets me stuck. Going the other way gets me stuck and has gotten me stuck since Day 1.

The "I'm Not Where Everyone Else Is" Trap


There’s a psychological concept called “social clock” – the idea that at a particular time in life, people are expected to have hit certain social milestones. The summer that I had the stroke, I went to a high school friend’s bridal shower. It seemed like everyone there was progressing nicely according to the social clock. They were done their undergrad degrees and either going into the workforce or starting advanced degrees. They were in serious relationships or married. Some of them already had kids. Their adult lives were beginning.

I’d dropped out of university after changing my major about six times, spent the summer goofing off in British Columbia with my best friend and a bunch of hippies, bled into my head during a job interview and was now relearning to tie my shoes. It’d be a couple of years before I tried independent living…working…dating…

I had a really difficult time letting go of the idea that I had to keep up with everybody else, and accepting that I couldn’t keep up everybody else because of my physical disabilities. I could only be where I was, and comparing myself to other people wasn’t going to change that. It was only going to make *me* feel bad about myself. I still struggle with this sometimes, even after God-knows-how-many hours of therapy since the stroke.

"Suck it Up, Buttercup"


But the bottom line of dealing with these “comparing” times is remarkably simple. I know now that they're one of those times where I have to make a choice: Am I going to let the fact that I’m not where I thought I was going to be when I was…in high school, say…dictate what my mood is today?  Or am I going to suck it up, choose to think about the fact that probably 80% of us aren’t where we thought we were going to be when we were in high school, and just…get on with things?

It’s not an easy choice to make some days.

But ultimately the choice is mine.

The cool thing (well, most days it’s cool) is that I – we – all of us – always have a choice.

Here are the links to the posts I mentioned:

http://smartasscripple.blogspot.com/2011/08/my-prayer-of-self-belittlement.html

http://www.ruthmadison.com/better-than/

Sunday, 14 August 2011

"Letting" People Be Who They Are

I'm going to talk about intellectual disabilities today, but I’m going to talk about one of my favourite movies: “Little Miss Sunshine”. If you’ve never seen it, intend on seeing it, and don’t want the experience to be totally spoiled for you, you’d best skip today’s entry.

The Hoover Family's Story


“Little Miss Sunshine” is the  story of the Hoover family’s quest to get 7-year-old Olive across the country in their van to the Little Miss Sunshine Beauty Contest. Olive is desperate to win. Not only is it her dream to be a beauty queen, but she wants to please her father, who is consumed with dividing the world into “winners” and “losers”. She also wants to please her grandfather, who choreographed the routine that she’ll perform for the talent portion of the competition and spent many hours practicing it with her.

The men of the family (Dad, the suicidal uncle, the older brother who’s only just recently broken a vow silence that lasted nearly a year) have never seen a child beauty pageant, and are disgusted by what they see in the talent competition before Olive is due to come onstage. They go to the dressing rooms and try to convince Mom that everyone is going to laugh at dumpy Olive, with her waist-length ponytail and her big glasses, and that it’s her job to protect her and stop her from going on.

Mom says, “We can’t take this away from her now. We have to let Olive be Olive.”

"Letting" People Be Who They Are


One day, while watching the movie, those words really stuck with me. They stuck with me all through the scene where Olive goes onstage and, to the family’s horror, they discover that the routine that Olive and Grandpa have worked on in secret for so long is a striptease to “Superfreak”. They stuck with me when Dad leads the family, among boos from the audience, in standing and clapping along with the music in support of Olive, who is having the time of her life onstage, totally oblivious to the fact that pageant officials are madly trying to get her off the stage.

It doesn’t seem quite right to compare Olive to the people with intellectual disabilities that I’ve supported, as she’s a child and I’ve mainly worked with adults. However, like Olive, they’re not always aware when they’re stepping outside the bounds of what is socially appropriate in a given situation, and sometimes they need coaching around that.

But watching the movie that day, I asked myself, who would I have been, if Olive had been an adult with intellectual disabilities with whom I was working? Someone standing up clapping, to let her know that I supported an unconventional decision? Or someone working with pageant officials to get her off the stage?

Do I let people be who they are, or do I coach that out of them in the name of making life “nicer” or “easier” for them or the people around them?

Asking Myself Tough Questions


I don’t think that I do. I may suggest things to think about if I see someone that I support going down a path that I’m relatively sure is going to take them further away from their goals, and I'm concerned that he or she doesn't understand the potential consequences of his or her actions. I out-and-out say, “That’s breaking the rules; if you keep doing it, you’re going to get in trouble,” if I see that happening. But I suspect that people would say, if anything, that I probably don’t put *enough* emphasis on considering what outcome a chosen course of action may have on others when I speak with people with intellectual disabilities that I support about it. I can see why they’d say this, but I don’t advise people the way I do because I believe that people with any sort of disability should deliberately hurt others in the name of self-determination. I just believe that people with disabilities have the right to self-determination, and that sometimes people in their lives get hurt or angry (often just out of worry) when they insist on it.

Finding The Balance


It seems to be another area where a balance in the way we (as family, friends or workers) offer support is essential. When does protecting an adult with intellectual disabilities or trying to coach them about social appropriateness become repressing who they are and what they’ll get out of growth opportunities? And while some boundaries or appropriateness are obvious…some aren’t. Who are we to decide them for other people? Or to decide that it’s better that people not learn from mistakes?

When do you let a person with intellectual disabilities “be who they are” and when do you try to “fix” who they are? Ideally, I’d say that we never try to “fix”, unless the person has asked for help with changing something.

But I know it’s not that black and white.

Is anything ever black and white?

I will probably write more about this.

For more information on "Little Miss Sunshine": http://www.imdb.com/title/tt0449059/

Saturday, 13 August 2011

My AVM Story: Feeling Loss

If you've been reading what I've written about stroke and subsequent disability even a little bit, I hope that you've picked up that I try to stay as positive about it all as I can. Just because my life turned out differently than I planned doesn't necessarily mean that it's going to be worse. And I believe right to my bones that if it does turn out to be worse, it's not going be because I've become a person who's living with disabilities.

A Sense of Loss


But sometimes it will hit that there's something from my pre-stroke life that I really like to do that's going to be very difficult in my post-stroke life, and there's a sadness that I can't deny. I feel around babies.  There's no physical reason why I can't have a baby - except that when it's born, how would I pick it up? How would I hold it? How on earth would I take care of a baby using one hand?

It's why I play with babies when they're in a high chair or playpen, or when I can get right down on the floor with them. I don't need to worry about having to pick them up.

It's not just big life transitions like having a baby that bring on that periodic, unexpected sadness.

Sudden and Intense


A couple of months after I'd returned home after stroke rehabilitation, I went to the high school to see the Drama Club perform their Spring play. I used my cane. The school had built a new theatre since I'd graduated, and I'd not seen it yet. When the play was over, and everyone had left, I walked  up onto the stage and wandered around it, getting a feel for it. I'd been really active in the Drama Club when I was in high school. I'd loved the theatre, and I'd loved to perform.

A teacher from the high school who hadn't seen me since I'd come home came onstage to say hello. We exchanged pleasantries and made some small talk, and then I suddenly started to cry. I was embarrassed, and I apologized.

"But I miss being onstage," I said. "And I can only think of one play that has a character with a disability in it." ("The Glass Menagerie"; I'm sure there are more, but the point was that I suddenly saw myself as being really limited in what I could do onstage. In that moment, that perceived reality was just...heart-breaking.)

Dealing with It


I don't necessarily feel that way anymore. I know that I won't be doing dance numbers in musicals, but it's more the strict rehearsal schedule that keeps me from trying out for community theatre than anything else. I don't see why a director couldn't cast a person with a disability even if the script doesn't say that the character is disabled.

But that's not really the point. The point is that sometimes, no matter how hard I try to stay positive, sadness about the way things have changed comes up and needs to be dealt with. It's less and less often, and my coping strategies are better than they used to be. I'm grateful for these things.

I'm grateful that there's lots to be happy with in life, that these losses feel less overwhelming as time passes.

Thursday, 11 August 2011

Hooray for Hollywood...?



So there's good news and bad news from Hollywood this week.

First, the Good News


The good news is that a documentary about people with intellectual disabilities was nominated for an Emmy.  "Monica and David", an HBO film about two people with Down's Syndrome who get married, also won Best Documentary at the Tribeca Film Festival.

This is definitely one I'd like to see.  In my experience, couples where both people have intellectual disabilities are mainly characterized by people without disabilities as "cute" (and not in a "Yeah, they make a cute couple," way, but the more patronizing "Awwww, isn't that cute!" way).  Hopefully this film will help to legitimize these adult relationships, where the people involved deal with adult issues and make commitments, in the eyes of society.

And Then, the Bad News


And, on the other end of the spectrum, the producers of "The Change-Up", a movie released on August 5 starring Jason Bateman and Ryan Reynolds, have sent shock waves through the disability community. The controversy stems from a bit of dialogue, where Ryan Reynolds' character observes about Jason Bateman's character's twin boys:

"Why aren't they talking yet? Are they retarded or something?" and then, "I don't know...this one looks a little Downsy."

Kudos to the Special Olympics for taking this and absolutely running with it. I remember some uproar about the liberal use of "retard" in "Tropic Thunder" a few years back, and the Special Olympics administrators have obviously had enough of this:

http://specialolympicsblog.wordpress.com/2011/08/09/universal-pictures-thinks-biggotry-is-acceptable-and-marketable/

And rightfully so.

You guys know how I feel about this. Even if you don't agree with me, check out what the Special Olympics blog entry has to say. You may change your mind when you hear what they have to say.
---

Thank you to Elizabeth McClung  at "Screw Bronze!" (http://elizabethmcclung.blogspot.com/) for putting me on her blog roll.  It's very generous of her. :)

Tuesday, 9 August 2011

Hugs-Because


A very dear friend has given me her permission to print this here, after reading the post that I wrote about babies with Down's Syndrome. She has a child with Down's Syndrome herself, and I'm honoured to have her her perspective represented here. Plus, she's the blog's first guest blogger!

Thank you, Tinks, for sharing your story. I'm in awe of you.

Hugs—Because...


Give a hug today—to your child, your spouse, your friend, a family member or your co-worker who’s having a bad day or just because you can.  Hugs are free.  And one small moment, one small touch can mean so much…

Afraid

It is an eye-opening, life-defining moment when you are afraid to hug or hold your own child.  My youngest child, Nicholas, was scheduled for heart surgery on January 8, 2002.  The night before the surgery, I went to see him in the pre-surgery unit of Driscoll’s Children’s hospital in Corpus Christi, Texas.  At two months old and eight pounds, Nicholas looked so small and frail, lying in a hospital bed, hooked up to what seemed like every medical device possible.  I didn’t want to hold him because he had a heart catheter attached to his right leg.  I was terrified that I would somehow dislodge it but the nurse insisted.

Now, as I reflect back, I understand the nurse’s insistence (and wisdom) in knowing but not saying, that this might be the last chance I had to hold my child while he was alive.  He said I needed to hold my son as the next time I would see Nicholas would be after surgery and I wouldn’t be able to hold him again for a few days.  The nurse gently placed Nicholas in my arms and he peacefully slept.  We sat quietly, Nicholas and I, among the cacophony of sounds from all the monitors in pre-surgical unit.  I silently prayed, wondered, and asked—Why this child? Why me?  Would God give me this child only to take him back a few short months later?

After handing Nicholas back to the nurse, I returned to my room. I couldn’t sleep as restless thoughts kept me awake.  Did I hold Nicholas long enough? Had I held him enough from the day he arrived home until now? I had lost six weeks of bonding with him as he went straight to the NICU unit on the day he was born.  Though I had spent almost every day of those six weeks in the NICU with him, had I held him enough when I was there?  I had two older children and I had to balance spending time with all three children. Had I held them enough?  I don’t remember. But babies and children are as tough as they are fragile.  Nicholas flourished in NICU and at home during the weeks before his surgery.  We all survived, adjusted, adapted and life went on as normal as possible until the day of his surgery arrived.

Waiting


The morning of his surgery, I went to see and touch him moments before they wheeled him away, and I cried then.  For the better part of five hours, I sat alone, in the waiting room, with my thoughts.  My (then) husband couldn’t get there before 10 a.m. as he was taking care of our two older kids.  William went off to school, and Sydney was to stay with our friend Helen—who literally became Sydney’s second mom in the weeks after Nicholas’s birth—God bless her. (Helen, I mean, and yes, Sydney, too)  The attendant (God bless her, too) in the waiting room, after realizing I was alone and unbeknownst to me, called the hospital pastor.  He came and sat with me, held my hand, said a prayer, and offered words of comfort and reassurance that I didn’t know I needed. God really blessed me with so much during this time. I had sent out an email to friends and family, requesting to have Nicholas put on prayer lists.  But those prayers, as it turned out, weren’t just for him—they were for me, too. I wasn’t alone during those five hours. Throughout the surgery I was calm, because I know now, that everyone was holding me.  I felt the warmth, the love and hugs of people embracing me. And I knew—God wasn’t ready for Nicholas yet.  I needed him more—probably to teach me patience--but more than likely—to learn how to hug—just because.

At noon, the surgeon came in to tell us that Nicholas was in post-op, the surgery was a success and that he (Nicholas, not the surgeon) was doing fine.  No complications, no problems and we could see him soon.   All I could think of at that moment was—this guy (the surgeon, not Nicholas) was in the Discovery Channel series “Saving Babies”—so what could go wrong?  Nicholas had the best there is.

A Part of Nicholas


There’s an eight-inch scar in the middle of his chest.  Two smaller half-inch scars dent his stomach, above his belly button, one on each side.  Faint tiny scars, now barely visible, are on his upper right leg.  There are moments when he lifts his shirt in public, mostly to annoy me, and I wonder, at times when if someone sees those scars—what will they think?  What will they say?  Those scars are a part of Nicholas as is the condition that they resulted from.  Nicholas has Down's Syndrome and the heart condition he was born with, is one of the most common heart defects of Down's Syndrome.  One of the valves in his heart didn’t close properly and needed to be repaired.

But those times of wondering what people will think are now few and far between.  As Nicholas grows older, these scars seem to get smaller and I don’t noticed them so such anymore. But they do remind me in those small quiet moments of what I could have lost.

Today, Nicholas gives hugs, freely and often, and to everyone.   And to me, especially when he knows he’s been naughty.  But many, many more times, when it is just ‘because.’   He knows, without knowing, how effective and affecting a simple hug can be.  When life becomes too overwhelming too handle, I cry.  (Seems to happen a lot more these days)  And it is Nicholas who gives me a hug (and a tissue).   These hugs remind me that there is nothing I can’t handle even when I think I can’t.  He knows I can.  And his ‘hugs—because’ (sometimes even of the strangling-type) are such simple gifts which can be shared-given and given back.   So give a ‘hugs-because’ today—just because you can.

Not Inspirational, Just Me

I commented on a blog last night that I thought the author was inspirational, cringing as I did so...not because I didn't mean what I said (because I did), but because I know how uncomfortable it makes me when people say that sort of thing to me.

I know that I went through a lot after the stroke, but I don't consider myself inspirational, or even especially any more brave or strong than anyone else. I appreciate the sentiment of the compliment when people call me those things, but I usually tell them, "You'd do the same. You'd find your way through it."

I have a lot of friends who've been through what I'd consider a lot worse and come out on the other side doing very well for themselves. Everyone's got their own "bag of bricks" and, all things considered, mine's pretty light.  I've always had a stable, supportive family, lots of other supportive adults in the wings, great friends, and opportunities to try new things.

For me, I also need to remember that even the people who aren't "finding their way through" their tough stuff the way we or society expects (or even sanctions) are sometimes still trying their best to cope with whatever "bag of bricks" they happen to be carrying. I'm not condoning bad behaviour. I'm saying that, for me, sometimes I have to remember that there's a reason, even if there isn't an excuse. Some days, especially working with the population that I do, this is a tough one.

But I know that I said some hurtful things to my dad when I was first living at home after my stroke. I'm sure that I don't even remember all of them. He says that he understands that it was the medications I was on. Maybe it was that. Maybe I was just angry that everything I'd planned for my life had gone so far off-track and he was a convenient target. Bad behaviour. No excuse. But reasons behind it. I'm sorry, Dad.

And I'm sorry, Miss McClung, for calling you inspirational. It won't happen again. ;-)



Monday, 8 August 2011

The Right Thing to Do

I'm currently writing an article for another website about website accessibility. It's a learning experience for me, because I really don't know a whole lot about website accessibility. I've interviewed a man who does, though, and I was really impressed by his level of commitment to accessibility testing for websites.

Why Accessibility?


People ask about accessibility (for physical spaces and for websites), "Why should we go through the cost and effort for something that's going to benefit such a small group?"  The simple answer is, as I've discussed elsewhere, is that when you use the principles of universal of design, whether it's for a physical space or a space on the Internet, you benefit everybody - even people without disabilities who, for whatever reason, have an easier time accessing the space when universal design is available.

For example, people with visual disabilities often find that the option to change the font size on a website allows them to find the way for them to best view the website. A person prone to headaches may also find that being able to increase the font reduces the incidence of their headaches. Or, a person like me who finds that software video tutorials simply move too fast may prefer to read the transcript provided for people with hearing impairments, even though my hearing is fine.

So, a well-designed, accessible site can potentially draw a lot of people to it.  The accessibility of the website may be what wins out when, say, a person who is red-green colourblind is trying to decide from which online store to purchase clothing, or when a person with a severe hearing impairment is trying to decide from which educational institution to take online courses.  These may seem like isolated incidents, but for a website that's counting on a high traffic over the long-term to survive, the "isolated incidents" are going to add up. Businesses especially can't afford *not* to look at an accessible website, any more than they can't afford not to look at being as physically accessible as possible.

The Right Thing to Do


And then there's the argument that accessibility, both physical and on the Internet, is just the right thing to do.

When I was waiting around after my first stroke and between my surgery to see what what the doctors wanted to do next, I volunteered at a social services agency in the area.  I had a discussion one day with one of the employees about physical accessibility. I said that I understood why, in a town full of such small businesses that struggled from season to season, making their buildings physically accessible was too much to take on financially.

"I don't." he said. He talked about how there were government grants to make buildings accessible, and how inaccessible buildings were a form of discrimination.

"You really think so?" I said.

"I certainly do," he said. He went on to talk about how if the business people in the town really thought that people in wheelchairs were good enough to be in their establishments, they'd find a way to make their establishments acceptable.

It was truly a different way of looking at the issue for me.  And I have to admit that after spending a year in a wheelchair, I've become much more militant about physical accessibility issues, especially in businesses.  As a person with disabilities, my money is just as good as anyone else's; if a business doesn't want to make me feel comfortable in its store (or doesn't want to even ensure that I can get in; I *have* run into this), then I'll take my money to a business that will.

I imagine that after I finish writing this article, I'll be looking at websites in a new way, too. And I certainly have some work to do on this website.

Because it's the right thing to do.

Thursday, 4 August 2011

Again...time for something completely different...

I went to see "Harry Potter and the Deathly Hallows" over the week-end.

A Bit of a Review


I really liked this installment of the "Potter" series (the final one in the series). I've been avoiding the films since the third one; there was something about that one that made me really sad. But this one I liked. The performances were very strong, the special effects were well-done, the 3D really enhances it...and, even though I haven't seen the first part of "The Deathly Hallows", having read the book several years ago was just enough to keep me from being totally lost in the plot. I missed the significance of a couple of small things, but I never felt absolutely clueless.

It's not a movie for children who are easily frightened. Lots of snake footage and  and character deaths and things jumping seemingly right at you because of the 3-D.

(Funny story about being startled in movies: For the first year or so after having my stroke, anything that startled me would make my weak arm literally "jump" from wherever it was resting, sometimes right up in the air.  And everyone had to sit on my left in movie theatres because of the way the wheelchair seating is set up. My family must have thought I was either trying to smack someone or going into a seizure.)

Where Are the Wizards With Disabilities?


Back to Harry Potter. It occurred to me as I watched that no one in the wizarding world uses any sort of mobility aid: no wheelchairs, canes, or prosthetic limbs, not even among the Muggle children at Hogwarts. And nothing set up so that a Muggle child with physical disabilities could attend if he or she wanted to:

  • Have to *run* through the wall at the train station to get through

  • Stairs, stairs, stairs galore at Hogwarts

  • No way to participate in Qidditch (presumably a student with disabilities could earn points for the house other ways, though)

I guess that there could be wizarding spells  that might help one overcome the effects of disabilities, even if it's just for a short time...

Not The Point, Really


The point of integration in schools has always been teaching students without disabilities that the students with disabilities really aren't that different than they are...about learning to see the person before the disability...about building a community that includes all people, not "fixing" the ones that have something "wrong" with them.


CNN recently calculated (and I have no idea where they came up with this figure) that it would cost $42 000 just in tuition per year to send a child to Hogwarts. Well, if  I'm spending that kind of money to send my kid to a wizarding school, I want he/she to come out a well-rounded wizard, including having access to wizards from other countries, faiths and lifestyles. And I definitely object to keeping otherwise eligible students out of the school just because they have disabilities.


So what say you, J.K. Rowling? Let's have the answer.


More about the movie: http://www.imdb.com/title/tt1201607/





Wednesday, 3 August 2011

Protecting Babies with Down Syndrome

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

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

"The Poppies" is a British blog, so I went searching to see if I could find research about similar medical attitudes in North America. I think that really I was shocked and wanted some research from a social scientist about whether *our* doctors actually felt it was appropriate to automatically put DNRs on babies with Down Syndrome with health problems, or not tell parents of babies with Down Syndrome about treatments that could help with these problems, or refuse to do life-saving surgeries on babies with Down Syndrome.

Just Bringing up Eugenics is Distasteful


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

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

Genetic Discrimination in France


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

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


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

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

Attitudes Toward Infants with Down Syndrome Need to Change


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

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

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

Tuesday, 2 August 2011

How to Dance with No Legs

http://www.youtube.com/watch?v=mLe9ZSwU4aQ&feature=share

One of my friends posted this remarkable video about a man with physical disabilities on Facebook the other night; I wish I could post the video directly here, but I'm not sure about copyright regulations. Trust me, it's worth watching.

Physical Disabilities Don't Need to Stop Anyone


The video features David Toole, at the time a member of Britain's Candoco Dance Company, in a pas de deux with a young ballerina. Toole doesn't have any legs. Their dance is beautiful and intense; it shows how dance need not be constrained by one's physical capabilities, and how if you love to do something...you should just find a way a way to do it, no matter what challenges you face.

Toole has moved on from the Candoco Dance Company, but it continues to operate.  Some of its dancers have physical disabilities, and some don't. http://www.candoco.co.uk/about-us/



Monday, 1 August 2011

The Bravest People I Know

Two things you might want to know about me: One, I often have trouble sleeping, which is why my blog posts usually get published at odd times like one or two am. Two, I hate rats. I know that they’re smart and they don’t carry diseases anymore. But I don’t like them. They make me very uncomfortable.

Far, Far Too Many Rats


So I was surprised that I could get through a rerun of “Hoarders”, airing in the wee hours of the morning when there’s very little else on, that involved removing upwards of 2000 large rats from a house. Normally I’d have run screeching for the remote control as soon the first rat hit the screen. But the story was compelling enough to keep me watching.

The therapist working with the man who lived in the house with the rats said that he was using them, as hoarders apparently do, to avoid dealing with difficult emotions – in his case, unresolved grief from the death of someone close to him (his wife, I believe; I missed the first few minutes of the show). The rats had literally become like family to him. He could identify ones that were special to him, and was actually currently grieving the loss of one that he identified as the likely the mother of a great deal of them. When the therapist talked about the prospect of Animal Rescue taking the rats away, he cried openly.

But he’d made a commitment to have the rats removed, taken to temporary shelters, and then distributed to pet stores because he said he knew that they would have a better life that way. And while the process of seeing them put in containers and, eventually, driven away in a moving truck was obviously incredibly painful for him, he kept coming back to that conviction, even after the official “clean-up” was over and he was finding rats that they’d missed, that he removed himself.

At the end of it, as they showed him crying, watching the truck pull away, I thought, “How brave…to give up something you love that much, when you know it’s going to cause such heartache…because you know there’s a better life for it out there.”

I don’t like rats any more than I did…but I was really touched.

And I felt…feel…really privileged, because I know it’s not the first time I’ve seen bravery like this.

Intellectual Disabilities and the Bravest People I Know


I’ve worked with many youth (kids, really, although they’re legally adults or close to adults) who, though their intellectual disabilities give them much less capacity than I had at their age to truly understand complex situations, have had to make decisions that will affect their adult lives for years to come. Most of them had family support, but some of them didn’t; some of them had support from family friends or other adults, but a couple were really on their own. Together we went down their “Preparation for Adulthood” checklist: Are your funding applications done? Do you have a doctor? Where do you want to live?

I watched these teens take huge steps, terrified, sometimes only meeting with new support people on the strength of me or another trusted person saying, “This might be something that you want to try; if you don’t like him/her, you don’t have to continue.” And it’s truly amazing when these young people reach a point where they’ve decided, “Yes, I want to change this about my life, so I will try," despite intellectual disabilities and anxiety about trying something new.

These youth were the more “high-functioning” of the ones with intellectual disabilities that I've worked with but they still faced significant cognitive (and often social) challenges. I, an Honours Students for my whole time in high school, couldn’t have done that stuff for myself at 17 or 18. But some of these kids with intellectual disabilities never had a choice. Perhaps that’s why every time one of them met one of these challenges that gets thrown at them, my heart just sang.

I really do consider some of them to be some of the bravest people I know. (I haven't even gotten into the older adults with intellectual disabilitiess, the ones that were institutionalized practically from birth and endured injustices that I don't even want to imagine, only to be relocated to communities where they knew no one them once the institutions started to close. These ladies and gentleman also amaze me.)

It's About the People


So that’s why several of the teens with intellectual disabilities that I've worked with came to mind as I watched this man on “Hoarders” hold it together for most of the screen time at least while he lived through two of what were probably the most difficult days of his life. It takes an incredible amount of courage to voluntarily stare your worst fears in the face, and I can’t get over how many times I saw the kids with intellectual disabilities I worked with do it. It humbles me. It makes me glad I chose the work that I do. It’s why, no matter what job I do…I’ll never stop doing work with people with intellectual disabilities in some capacity, even if it's just volunteer.

I would just miss the people too much.