Tuesday, 31 January 2012

Proposed Changes to Diagnostic Criteria for Autism and "The Big BangTheory"

So...I Was Reading About the Proposed Changes to the Diagnostic Criteria for Autism in the DSM-V

I thought that I would be steadfastly opposed to the changes. But I was surprised to find myself, after reading some articles and some parent blogs, unsure about where I stand on them.

It's not that I don't believe that the conditions that are most likely to be affected by the the diagnostic criteria for autism (Asperger's Syndrome and Pervasive Developmental Disorder Not Otherwise Specified) don't exist. It's not that I don't share concerns that the proposed DSM-V diagnostic criteria for autism might narrow the definition of autism so that people who would have been diagnosed with Asperger's or P.D.D.N.O.S. might not be any longer, and therefore be denied needed supports and services.

I just wonder if we've built Asperger's especially up in our minds (at least in some cases) as something that requires more supports and services than it actually does. If so, the changes to the diagnostic criteria for autism might actually move us back to a more balanced view of autism and of people.

I think what really brought this out for me was a quote from a mother of a woman with Asperger's saying that she was afraid that her daughter wouldn't get into supportive housing if she lost her diagnosis under the new diagnostic criteria criteria for autism, and another quote from Lori Shery, President of the Asperger's Education Network:

“If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

"God forbid they experience failure," I thought.

Lessons from "Sheldon"

Sheldon Cooper, one of the main characters on the CBS hit "The Big Bang Theory", is seen in different ways by different people. One group (which includes my father) sees the character's tendency to take everything literally, his apparent lack of empathy and inability to understand social cues and rituals until they're explained to him, his focus on his own set of rituals, and his difficulty with dealing with changes in his routine, as delightfully "quirky."

My friends in social services and I see him as a wonderful study in Asperger's syndrome, although it's never been mentioned in the show.  It doesn't matter. Sheldon has his own group of (non-disabled) peers, including a roommate, a girlfriend, and friends at work. His "quirks" sometimes drive them crazy, but they've developed ways of dealing with them.

Sheldon doesn't always thrive in the "real world", by any means.  His difficulties relating to people and understanding social conventions cause him setbacks, and he doesn't always understand what has happened and why. But he functions in his job and his relationships, without a diagnosis and without any formal supports.

I'm really uncomfortable with the idea that social services' role is to protect people from failure, or surround them with so much support that they can't be "quirky" anymore.  Because people with disabilities need to learn how to deal with failure, just like the rest of us...and part of making society truly inclusive is learning to deal with other peoples' "quirks", whether there's a diagnosis attached to them or not.

Asking Tough Questions...

To be clear: I'm not denying that Asperger's Syndrome and P.D.D.N.O.S. may present challenges that require support. The proposed changes to diagnostic criteria for autism for the DSM-V need to take into account that some vital supports, including respite, require a diagnosis, and researchers need to question whether their plan to use one set of criteria to diagnose all the autism spectrum disorders actually captures the full range of the spectrum. For our part, as parents, educators, advocates, and agency workers, we need to ask ourselves some questions before we start to panic about the implications of the new diagnostic criteria for autism:

  • How are our attitudes toward  and perceptions of autism and disability affecting our reactions to this news?  Is our thinking accurate in all areas?

  • Regardless of whether the new diagnostic criteria for autism goes through, how do we teach society to see the person before the diagnosis, and realize that there are people out there who (for a variety of reasons) have trouble in social situations?  Sometimes that's just who people are...

I need to do some more reading on the proposed changes to diagnostic criteria for autism. I'd like to hear other peoples' thoughts.  Click these links to learn more about the proposed changes and their potential implications:



And more on "The Big Bang Theory": http://www.cbs.com/shows/big_bang_theory/

Sunday, 29 January 2012

Time to Rethink Sheltered Workshops?

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


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

I've Heard the Arguments for Keeping Sheltered Workshops

  • Parents and caregivers like them because they give people with intellectual disabilities a place to go for the day.

  • People who have been in sheltered workshops for a long time often like them because it is a place to go during the day where they can be with their peers, do some work and make a bit of money.

  • It's an easy way to give people with intellectual disabilities some employment opportunities.

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

  • People with intellectual disabilities deserve more than a "place to go for the day". Agencies should not be providing baby-sitting services or warehousing facilities. As the article points out, that's going back to the days of institutions.

  • If a person with disabilities wants to meet up with other friends who have disabilities, why come to a sheltered workshop to do it? Why not go for lunch or coffee, or visit someone at their home, like people without disabilities do?

  • Why do a job in a sheltered workshop setting and not receive adequate compensation when a person with an intellectual disability can do the same job out in a community setting, get paid for the work, make new friends and have new experiences? Isn't money better spent on providing the support people need to obtain those kinds of employment opportunities?

Oregon Service Providers, Meet Me at Camera Three...

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

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

Think about it.

Saturday, 28 January 2012

Bella Santorum Hospitalized

Bella Santorum, daughter of Republican Presidential hopeful Rick Santorum, has been hospitalized. Bella has Trisomy-18, a genetic condition characterized by intellectual disability and severe health issues.

More information on Trisomy-18: http://www.trisomy18.org/site/PageServer

Rick Santorum has cancelled campaigning events on Sunday to spend time with Bella at Children's Hospital of Philadelphia.  I can't imagine how difficult it must be to be on the road so much when one has a child with health issues, and I hope they have a good day together.  Let's hope for Bella's speedy recovery.


Welfare Benefit Reform protest...London makes itself heard

Wheelchairs chained in protest of Welfare Benefit Reform at Oxford Circus in London, England earlier today. The protest is still going on...Twitter says that over 200 people have shut down Oxford Street and are now on the move.  Traffic backlogged past Regent Street.


Rock on, London!  I'm with you in spirit!

Thursday, 26 January 2012

Judge Upholds Order on Accessible Taxis in New York City

Meanwhile, from the "Accessible Taxis in New York City" file...

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


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

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

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

On a Brighter Note...

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


Mayor Bloomberg, meet me at Camera Three...

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

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

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

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

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

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

Tuesday, 24 January 2012

Rick Santorum Strikes Again

I Know...Again With Rick Santorum...

Okay, okay, I realize that I've been writing a lot about Rick Santorum lately. I've got a lot I could say about the rest of the Republican Presidential hopefuls as well, trust me - the prospect of any of them as US President makes me glad that I live in Canada, frankly. But Santorum always seems to bring it back to a disability issue, and this is a disabilities blog, so he just always gives me a lot to work with, bless his heart.

This time it's his comments to Piers Morgan on Friday, January 20 about rape that have got me irked.


A Blast From My Past...But This Is Now

As I've said in this blog before, I used to be an evangelical Christian and pro-life. I was a teenager, and life was very black-and-white back then.

Life is one big blur of grey now. I know women who've had abortions for a variety of reasons - some of them have been raped. In my work, I've never had to support a woman with an intellectual disability who's been pregnant because of rape, but I've been in a couple of positions over the years where I've had to help women with intellectual disabilities deal with a sexual assault. It's heart-breaking to have to watch any woman come to terms with "Why me?" and to have to work through flashbacks, and through shame and guilt, and to help them change perceptions that what happened to them was somehow their fault. When a woman's cognitive capacity to understand these questions and feelings is lowered, it can feel impossible to to help them out of the personal hell that a rape creates.

And yet, on top of this, Rick Santorum suggests that rape victims "make the best of a bad situation" if a rape results in a pregnancy and carry the fetus to term. I wonder if that's what he'd want for his disabled daughter, Bella Santorum, if she were ever raped (not that I'd *ever*wish something so horrible on her or anybody)? To put that pressure on top of her, after everything that her body and mind would already be struggling to understand and process?

"Make the best of a bad situation" is just too disturbingly close, as commenter Jim Spice said, to  "Relax and enjoy it."  And it's too big a burden to ask of any woman, Rick Santorum, but particularly of those that may not be able to understand what has happened.

Now, that being said...if a woman with an intellectual disability is pregnant as a result of a rape, makes her own medical decisions, and says, "I want to keep the baby"...different story. Different story altogether.


Rick Santorum...I want to write something nice about you. Promise American citizens something good regarding disability issues so that can I say something complimentary and then keep you out of my blog!

Monday, 23 January 2012

A Bit of a Rant on Information Accessibility

Another Post About Information Accessibility

Earlier in the month I talked about information accessibility and about how sometimes systems of getting information to people aren't set up in a way that's convenient or even comprehensible (http://www.girlwiththecane.com/information-accessibility/). I found the mother of all examples of this last Friday, and thought I would share it with you.

Ready to Start Driving Again

I've had a seizure disorder since my second stroke, caused by scar tissue left after the brain surgery. Because of the seizures, my driver's license was taken away from me almost immediately after the stroke. In some ways, not being a licensed driver in a spread-out rural community without any public transportation has been just as difficult as learning to live using one hand, but that's a story for another day.

I take anti-seizure medication, and am finally to the point where I've been seizure-free for over a year. This means that I can start the process of getting my license back again - under Ontario's graduated licensing system, it takes two years to become a fully licensed driver. I decided to write the knowledge test that will let me drive on most roads, with some restrictions, as long as there's a person who's had their license for at least four years in the car with me.

Information Accessibility and Me

The nearest place to write the knowledge test is 45 minutes away, so I had to arrange to have my father drive me. I looked on the Ministry of Transportation website to see what ID I'd need to bring, but found information confusing. At one point it appeared that I just needed one piece, and at another point they seemed to want two. I called the phone number of the Ministry of Transportation office in the town where I'd be writing the knowledge test.

The rest of it went a little like this:

1. Voice mail gave another number for people calling concerning licensing *or* two extensions.
2. The phone number was for a bakery.
3. The first extension took me to Service Ontario, a government service centre that doesn't know anything about licensing. The woman on the phone referred me to the website.
4. When I explained that I'd already been to the website and was confused by what it was saying, she said that I couldn't ask the driving test people because there isn't a line for the public to that office.
5. She went to the website to see if she could find the answer to my question.
6. Sensing at that point that I was really annoyed, she said it was a slow day, and she'd make some phone calls to see if she could get the answer and call me back.
7. Which she did. But she still only had speculation - no concrete answers.

Big Questions about Information Accessibility

I do appreciate the Service Ontario woman's attempts to help me. I know that Service Ontario centres are generally very busy. And I understand that there's likely no public line to the offices that do driver testing just because the employees don't want to spend the day dealing with nuisance calls like mine.

But we're back to the issue of information accessibility. You don't have to have a high level of literacy to write the knowledge test - you can arrange to do the test orally. I've never supported someone with a developmental disability to get a driver's license, but I know it's been done. What if I couldn't read the website? What if I didn't have Internet access?

What if there's a question that I just need a human being to answer?

At least the Ontario Disability Support Program takes a stab at information accessibility. Their reading material can be difficult to understand, yes. But there's a direct phone line to them, with places for people to leave a message for their income support specialist, and the income support specialists have designated days where it's more likely that you'll reach them if you call. It may take them a bit to get back to you, but it's always been my experience that they do (at least in my part of the province).

The government really needs to do some thinking about information accessibility. If government services are going to keep referring people to the Internet for information, there needs to be an overhaul in how the government views the Internet as information tool - websites need more plain speech and diagrams, simpler graphic user interfaces, and more intuitive processes. More public access to Internet is also necessary.

Or, they can put more human beings on the phones.

Which would ultimately be cheaper, I wonder?

Sunday, 22 January 2012

More on DLA Cuts and the Spartacus Report

I'm linking to this blog post because I think it shows a bit better than I can explain what is happening with the proposed Daily Living Allowance (DLA) cuts in England.  The Spartacus Report was written to show how necessary it is to keep funding at its current levels.

Scary Stuff

This post was really eye-opening for me. For many, this struggle is a matter of life and death...and when you the numbers behind it, it really is an outrage.


I plan to do more reading about the proposed DLA cuts and the Spartacus Report this so that I can comment more thoroughly and with a greater level of understanding.

Thursday, 19 January 2012

Bob Marshall and Why I Won't Give Up

Now, before anyone gets the wrong idea as I address remarks made by Virginia State Delegate Bob Marshall in 2010...

I am not anti-Christian or anti-religious. Yes, I was raised a Christian and choose to no longer affiliate myself with that belief system, but I choose (as much as possible) not to align myself with any belief system. I have devout religious friends, including Christians, for whom I have a great deal of respect and affection...but I've also encountered attitudes from religious people, including Christians, that make me very sad, and sometimes very angry. I read about some of those attitudes from Bob Marshall this week.

Nature's Vengeance

This goes back to a press conference in February 2010 against state funding for Planned Parenthood (still an issue for many politicians in this election season, by the way). Why bring up remarks from 2010? Because beliefs like these simply have no place in the 21st century:

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children. In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There’s a special punishment Christians would suggest.”

Read the full story here: http://thinkprogress.org/politics/2010/02/22/83337/disabled-abortion/?mobile=nc

Sarah's Anger

I'm a very patient, non-judgemental person. You have to be, in my line of work. But when I read statements like this...my heart starts to race, and I can feel the tears starting to build up behind my eyes, and my breathing starts to become ragged. Comments like this stay with me. I ponder how illogical they are, how scientifically unsupportable...

And eventually I cry over them, because I wonder how people with disabilities can ever hope to be regarded as equals, or hope to live a life of dignity and respect and full participation in community life, when there are still people out there that view them as a punishment.

Bob Marshall Will Not Stop Me

Sometimes when I hear comments like the ones Bob Marshall made, I wonder why I bother being a disability advocate and trying to make things better for people with disabilities. But then I'll get a phone call like I did tonight, from a young man with an intellectual disability that I helped to get on his feet after he graduated from school. He just wanted to say hi. But hearing how well he was doing, and knowing that I had helped to get him to that point, made me feel like there's good in fighting for these people that are *not* mistakes or punishments, no matter who says so.

I will not let Bob Marshall or anyone else take away my conviction that everyone has value in this world, not just the people who are "able". I refuse to believe that the world...or God...operates that way.

Tuesday, 17 January 2012

Amelia Rivera Needs a Kidney Transplant

Amelia Rivera Needs a Kidney Transplant

So, as of Monday, the Children's Hospital of Philadelphia (CHOP) had contacted Amelia Rivera's family to talk about a kidney transplant for the three-year-old girl, according to CBS-Philapelphia.  But the donor kidney will not come from the transplant waiting list, (although the Huffington post says that the hospital appears to have changed its original position that it wouldn't perform the transplant surgery.) (http://philadelphia.cbslocal.com/2012/01/16/childrens-hospital-denies-withholding-kidney-transplant-for-disabled-girl/.)

Amelia Rivera has Wolf-Hirschhorn syndrome, a developmental disability that causes intellectual disability and distinct facial features, and that can cause seizures, heart defects, and other serious health concerns.

The controversy stems from mother Chrissy's post on a Wolf-Hirschhorn support blog. She talked about how a doctor at CHOP told her that Amelia would not be considered a candidate for kidney transplant because she was "mentally retarded". When the news hit the Internet, people were outraged, and an online petition was created that now has 24 000 signatures.

The Case Against Putting Amelia Rivera on the Transplant Waiting List

Lisa Bilkin of the Huffington Post wrote a reasoned, unemotional (but not uncaring) column about why Amelia Rivera should not get the kidney. And if she can get me to see her point of view on something like this, she's made her point well. The kidney will most likely only prolong Amelia's life, not save it. The transplant and recovery process will be difficult, and the outcome is uncertain given her other health issues. Given the scarcity of donor organs, especially for children, from the standpoint of the organ donation system, there are simply better candidates. And in this context, the doctor was likely using "mentally retarded" as diagnostic criteria. The most sensitive choice of words, given the situation? No. But likely not meant to be as insensitive as it sounds like it was. http://www.huffingtonpost.com/susan-senator/kidney-transplant_b_1208540.html

All of this is certainly cold comfort to the Rivera family. Which is why I'm glad the Huffington Post also posted the other viewpoint.

The Case for putting Amelia Rivera on the Transplant Waiting List

Susan Senator's take on Amelia Rivera's situation is that it's another manifestation of what she's seen time and time again in the life of her son (who has autism): people with disabilities are still seen as inferior. Despite CHOP's insistence that it doesn't discriminate on the basis of disability, ultimately it's Amelia's disability that *is* determining whether or not she gets put on the waiting list. And perhaps Bilkin is right in that this is "the way it is" right now...but I agree with Senator's assessment that it *should* be different, and that we have a responsibility to work toward leveling the playing field. Because, as Senator says, it shouldn't be up to doctors to decide whether this little girl's life is worth less than someone else's based on her cognitive capacity and speculations on the outcome and/or her potential quality of life after the transplant. Doctors are not always right. People should be given a chance at life regardless of disability. http://www.huffingtonpost.com/susan-senator/kidney-transplant_b_1208540.html

A Confounding Variable

I had signed the petition to get the hospital to put Amelia Rivera on the transplant list before I read either of the Huffington post commentaries. However, Bilkin's commentary brought some information to light that I wasn't aware of, and that I think makes the hospital's claim that this isn't a case of discrimination even more suspicious.

Chrissy Rivera told Bilkin that the family never wanted Amelia put on the transplant list. They wanted to give her a kidney themselves, but were told by the hospital that it wouldn't perform the transplant surgery. Bilkin ran this by pediatrician and geneticist Kurt Hirschhorn, who said that there was no reason for the hospital not to perform the transplant surgery in that circumstance as long as the donor fully understood Amelia's situation.

The hospital had changed its position on performing the surgery on Sunday night when Bilkin called the family. But the outrage about not putting people with disabilities on the transplant list continues to build.

Proper thing. I'm putting the commentaries by Bilkin and Senator out there as a call for change. Please go read them, think about them, and think about what you can do for families in situations like the Rivera's...it could be as simple as signing your name.

And if you'd like to digitally sign the online petition to have Amelia Rivera put on the transplant list, here's the link: http://www.change.org/petitions/director-of-public-relations-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

More about Wolf-Hirschhorn syndrome: http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome/

Update, Jan 21: Sunday Stilwell has notified me via comment that CHOP hasn't actually changed its mind on whether it will perform the transplant surgery. This is very disappointing news.

Monday, 16 January 2012

Sexual Assault and Disability: Behind the Eight Ball

I was watching an episode of "Law and Order: SVU" this weekend. You may remember from other posts that this particular television show, even among those within the "Law and Order" franchise, challenges me (and often disturbs me) like few others. This episode involved the sexual assault of a young woman with a mental condition.

Sexual Assault and Disadvantaged Groups

In this episode, a young man in an inpatient mental health facility witnesses a female resident being sexually assaulted by a staff member, prompting an investigation by the Special Victims Unit. Their investigation reveals that the assailant isn't on staff at all. He's the girl's uncle, sneaking in disguised as a doctor, using an ID lifted from a staff member. The young woman is 24. He has been raping her since she was 14.

The SVU detectives talk to the young woman about to whom she disclosed the abuse when she was a teenager, and about why nothing was done at the time. It appears to be a case of a family in denial, not wanting to believe that an immediate family member could do something like that. When one of the detectives promises that the uncle will never touch her again, the young woman just laughs and says that there's no way that will happen.

"Why?" the detective says.

"Because," the young woman says. "He's sane and I'm crazy."

How often does that happen?, I wondered. How often does it happen that someone makes an allegation of sexual assault and the people around them say, "Well, he's crazy...it's him imagining things again," or "She's retarded...she misunderstood." or even, like in the some of the New York state group homes that are coming under scrutiny, the caregivers just didn't give enough of a damn to even call the police even though they knew that they should.

"Reliable Witness" and Sexual Assault

I know that these things happen. I've talked to people with disabilities who have told me about abuse and then said, "But I told people and they didn't do anything, so why should I tell anyone else?"

I also know that there are very good reasons why some people with mental conditions and intellectual disabilities don't make reliable witnesses when it comes to making sexual assault allegations. Their stories fall apart under scrutiny, or details come out that make authorities suspect that an encounter was actually consensual...even when it still might not have been. People with developmental disabilities specifically may have made an allegation using the wrong terminology but some sort of assault still may have happened.

It can become very sensitive, involved work, to untangle all the threads, and figure out if there's actually an assault allegation there on which people need to move when the witness seems "unreliable", particularly if a disability complicates the issue. But it's especially when a disability complicates the issue that the appropriate professionals need to be brought in, to ensure that the sensitive, involved work is done. The concern should be with ensuring something really didn't happen before the person is labelled an "unreliable witness" and the case dropped on that basis. These cases can simply too complicated to let that happen, and no one should feel that they're at a disadvantage at a sexual assault trial because of a disability.

Accessibility in the Judicial System

The judicial system is already a daunting place for people with mental conditions and intellectual disabilities (or both). It's intimidating, the questions are difficult to understand, the rights of the people involved are difficult to understand and the processes aren't intuitive. We need advocates to help the judicial system become more accessible for those whose disabilities affect how they experience life and how they communicate those experiences to others - and to mitigate the experience of feeling like they've lost before the trial has even begun.

More on sexual abuse of people with disabilities:


Thursday, 12 January 2012

Cultures of Inclusion

As we move into a society where creating cultures of inclusion for people with disabilities becomes more and more important, administration of social institutions in particular need to remember two words: top-down.  It's all about creating cultures of inclusion that start from the very top of the organizational hierarchy and pervade the entire organization, touching the person at the very bottom of the hierarchy.

*Your* Part in Creating Cultures of Inclusion

"You set the tone," Dr. Greene (Anthony Edwards) said to young Dr. Carter (Noah Wyle) in the opening episode of the long-running "ER" series. This is true. We do set an example for others by how we interact with people with disabilities in all areas of life: at work, church, on the street, in the grocery store, at our kids' hockey games, in PTA meetings...wherever we are. Chances are that if you're in a group, someone there has some sort of disability, even if it isn't visible.

Management's Part in Creating Cultures of Inclusion

In organizations, though, management has an extra responsibility to "set the tone". The phrase "culture of inclusion" describes an atmosphere where the staff in organizations and the people that they serve are comfortable with the fact that people are different and where people are treated with respect and dignity, as full community members, despite their differences. Good managers are aware of the legislation surrounding disabilities and hiring practices and know the advantages of having a diverse staff.  When managers embrace the ideals of cultures of inclusion, it filters down in their policies, the day-to-day of the organization, and the way the organization, whether profit or non-profit, serves the community.

Schools and Cultures of Inclusion

School administrations in particular can have a powerful effect by creating cultures of inclusion among students. Special education programs have been hit hard with budget cuts, and many students who would have had classroom Educational Assistant support in the past will not get it now. But perhaps this will spur educators to think outside the box about the nature of supports that students actually need:

  • Given the intensity level, frequency and duration of support that a student needs (not to mention what subjects interest them and what they'd like to do after graduating!), do they really need an EA?

  • If the student has an intellectual disability and is low-functioning (for lack of a better word), are there some classes that might interest them as an observer? A music class? A gym class?

  • Could volunteer students from the school go with some of the students in segregated special education classes to noon hour events?

Everyone can benefit from seeing students with disabilities participate in school events, and students with disabilities, especially those in segregated special education classrooms, often welcome the opportunities to meet other students and make new friends. In some schools, there isn't much of a chance for anyone to get to know students in segregated classrooms, and that doesn't promote cultures of inclusion.  Positive relationships with people with disabilities as children and young adults is going to carry over into adulthood for students without disabilities. Also, these relationships enrich the lives of people with disabilities. Particularly for people with intellectual disabilities, they're an opportunity to try new things and learn valuable interpersonal skills. It's very important that school administrators create opportunities for these relationships to happen.

Even cultures of inclusion that seems forced at first can develop into something more organic and spontaneous, and can benefit everyone.  Read about the Heads Up for Inclusion project, which focused on developing cultures of inclusion in several Ontario schools:


So, managers, remember...top-down! *You* set the tone for your organization when it comes to how people with disabilities are treated.  Set a good one.

Wednesday, 11 January 2012

Could Disability Happen to You?

I once heard a comedian/disability advocate introduce himself at the beginning of one of his shows as "not disabled yet." Nicely played, I thought.  Because while disability isn't inevitable for everyone,  there's a good chance that for many people, age (if not circumstance) is eventually going bring some sort of disability.

We just don't like to think about it until it happens. And when it does, the world starts to look much differently than it did.

"It Could Never Happen to Me"

I learned from the Human Development Course that I took a few years ago that part of the reason that teenagers engage in risky behaviour is that they think that they're invincible. I submit that part of us never stops thinking this way. We never consider that we could someday have to use a wheelchair to get around, or use disabled parking, or have to rely on social assistance because a disability prevents us from working.

Until it happens. And then it becomes startlingly clear just how difficult it can be to get around even spaces that are "accessible";how few the disabled parking spaces are (especially when people without passes use them when they're just going to "run in" to the store); how fiercely people feel about tax dollars going to monthly income support for people that genuinely can't work because of disability that doesn't even allow them to meet the poverty line.

Why Disability Could Happen to You

One of the men at at Ottawa Rehabilitation Centre had a spinal cord injury that had left him a paraplegic. He was fairly young, mid-thirties at the most. The cause of his injury hadn't been dramatic. He'd been on an all-terrain vehicle, going about ten miles an hour.  The ATV had hit a rock in the trail, and flipped. He'd hit his spine.

It's that easy and unexpected.

Even a bad fall could do it. When my father broke his arm after a fall in the woods, he got an uncomfortable taste of what it was like to live one-handed (which, as much as I'm used to it now, can be decidedly inconvenient).

My Point

My point is...it's easy to ignore disability issues because they don't affect us in the moment. I was guilty of it myself. But if we're committed to building a society where everyone feels valued and every life has dignity, we've got to try to put ourselves in other peoples' shoes and see things from their perspective - not just say "but for the grace of God..." and move on.

What other groups should we be doing this with, do you think?

Monday, 9 January 2012

I Support the Spartacus Report


Disability advocate Sue Marsh put this report together, with the help and support of other people with disabilities in the UK. It brings to light some disturbing information about the direction that income support for people with disability is going in the UK, and the process by which the government made these reforms.  One of the blogs that I looked at said that people are already dying because of these reforms.

I have to admit that I only have a passing knowledge of what's been going on in the UK, and that I didn't know about this report until today. But I have friends with disabilities in the UK, and wanted to show my support. I fear that a similar situation could someday happen in the United States, or even Canada.

If you live in the UK, please sign the petition at the bottom of the linked page...thanks.

Information Accessibility - Information for Everybody

Information accessibility issues get very little, if any, attention.

Information Accessibility

We're all familiar with physical accessibility issues, and we're becoming more familiar with accessibility issues around hearing impairments, visual impairments, and even web design accessibility. But we're only starting to learn, it seems about making information accessible (which can use elements of all other types of accessibility).

Let's look at this example: Getting information about the Ontario Disability Support Program

  • Even finding the phone number in a phone book would be too much for some of highest-functioning (for lack of a better term) people with intellectual disabilities that I've supported to find without some assistance.

  • The voice mail system at ODSP makes you key in an extension based on the first letter of your last name. You have to listen carefully, because the letters are not presented sequentially (for example, you may have to key in a certain extension if your last name starts with A-L, Q, T, X or Z). Most times, the call goes directly to voice mail.

  • ODSP does have a web site, but it's confusing to use and provides limited information on the program. You are referred to your local office, which can be difficult for people to ascertain.

It's confusing even for people without intellectual disabilities.  It's not good "information architecture", as they say in the technical writing world. Depending where you are, other factors make the information even more difficult to access.

Different Region, Different Information Accessibility Needs

I remember going to quarterly regional meetings of the transition program in which I once worked, hearing about the fabulous things that everyone else was doing, and thinking, "That just won't work where we are." I wasn't trying to be negative. I just saw us facing different access challenges, as a very small town, than the people from larger centres did: no public transportation, lower literacy rates, fewer people with internet access in the home...it affected the way families that I supported understood their options for their children once they graduated, and often it meant an intensive level of support for some students and families. I felt like we did things differently than the programs in the larger centres, out of necessity, because needs of students and families were different.

Those Darn Assumptions

Which isn't necessarily bad.  But there are assumptions out there now that *everyone* has internet access and knows how to use it effectively. A number of factors may make this simply not true, and it keeps people (and not just people with intellectual disabilities...if I'm having trouble getting what I need from a government website, then other people are people are as well) from getting information that 1) they're entitled to and 2) that they need.

It creates inequalities, and therefore needs to be addressed, whether it's through providing more support to assist people to understand information to or restructuring information architecture so that it makes information more accessible and understandable...or both.

Friday, 6 January 2012

My Brain AVM Story: Michael

This is another essay from my book "Run, Run Because You Can". It's a little long, but it's a reader favourite. I hope that you enjoy it.


Some people that I met during in-patient rehabilitation were part of  my  post-stroke life for only a very brief time, but impacted me greatly. Michael was one of them.  He came to Penetanguishene General about six weeks into my stay. He’d also had a stroke that had affected his dominant side.

Michael was in his sixties. I didn’t hear him speak for several days after he arrived.  His wife was with him whenever possible, and for the first couple of days I mistook his quiet for terror.  He actually couldn’t speak, as his stroke had severely affected his speech as well as his mobility. I was again reminded to count my blessings.

Due to the nature of Michael’s stroke, his recovery process moved much faster than mine. However, it also worked in his favour that he worked even harder at rehabilitation than I did (and I was working pretty damn hard). He had the best attitude that I saw in anyone, in all my time in rehabilitation. Before long, he could give one-word responses to questions such as “How are you?” (to which he always gave an emphatic “Excellent!”). He was soon talking in short, halting sentences when his wife came to the hospital to have dinner with him. He did his physiotherapy and occupational therapy exercises diligently and without complaint. When the physiotherapists gave him the “okay” to walk short distances with a cane, he would practice even after daily therapy hours were over, until the nurses would make him stop. His determination renewed mine, and made me want to work even harder than I was.

Kindred Spirits

Sometimes we were in the Occupational Therapy room at the same time.  He did worksheets while I did my arm exercises. One day, another patient was complaining that Jim, one of the physiotherapists, was in a terrible mood. I was struck (not for the first time) that someone was always complaining about something on that floor, and I tried to hide my annoyance.

“He’s probably just having a rough morning,” I sighed as I did a set of reps with the eight-pound weights, using my right wrist. Part of my therapy was to strengthen my right arm in preparation for making it my dominant arm. Being able to lift eight pounds with your wrist is pretty good. Normally, I’d have been very proud to be able to do that. However, it just didn’t seem very impressive that morning.

brain avm“Jim’s. Hung. Over.” said Michael, and winked at me.  Due to his speech difficulties, when he spoke, he had to pause between each word for a short period. That time it didn’t even register; the words were so unexpected and yet so perfectly timed that I’d started to giggle before I could stop myself.

Once I started giggling, I couldn’t stop.  The morning suddenly looked a little less gloomy. Ellen, the occupational therapist, looked over at me to see what so funny, but I couldn’t explain myself, and I didn’t really feel like it anyway. When I looked over at Michael, he was grinning, and I thought, I like this guy.

Another time, as I laboured to stack cups using my left hand, Michael started looking to me for help with his memory worksheet. He was stuck on a grammar exercise.  Thinking back to how difficult it was for him to retrieve words, and how he sometimes got different elements of speech mixed up, I am so grateful that most of the machinery for that sort of thing is on the opposite side of my head from where I bled.

“Take. This....” he read from the sheet. He was to supply a noun.

“Take this...” I wrinkled up my face, hoping that maybe if I thought hard enough, my hand would work and I could stack the plastic cups effortlessly.

“Take. This. And. Shove. It.” said Michael.

I nodded. He’d pretty much summed it up. I suddenly felt a kinship with Michael, perhaps just based on a mutual frustration (and perhaps boredom) with occupational therapy exercises, but a kinship nonetheless. A little while later, during our one, real conversation, I realized that there was perhaps a deeper bond of understanding behind it.

"I. Love. My. Life.

We were both sitting on the porch between physiotherapy sessions. The other people with whom we’d been talking had gone back inside. We were sitting out in our wheelchairs in comfortable silence, enjoying the sunny day. PGH was a nice hospital, on a scenic piece of property. I could almost believe that I was out in the country when I looked off the porch at the surrounding trees.

At length, I started asking Michael about his life outside the hospital. He talked, in his slow, halting speech, about his wife (who still came daily to have dinner with him), his children, and his grandchildren. He talked about how worked in a bank for most of his career, and about how much he now enjoyed doing things outside now that he was retired from his job. He particularly enjoyed snowmobiling.

After a while, he became silent. He stopped looking at me and appeared to be biting his lip.  It took me a moment to realize that he was trying not to cry. I suddenly felt very, very badly. I’d only been trying to make conversation, but obviously I’d hit a nerve. I knew which one was it was, too. When hit it the right way, it was a sharp, stinging reminder that just a little bit of blood where it shouldn’t be could turn your world upside down and change it forever.

“I. Love. My. Life.” he said softly.  “I. Love. My. Life.”

Yes, I said to myself, looking at my hands.

He quickly turned his wheelchair away from the railing and started to roll towards the door. Halfway there, he broke down and started to sob.

My heart was breaking. I rolled toward him in my chair, absolutely clueless as to what I was going to say or do, but feeling like I needed to do something to let him know that I understood. I had my hand reached out to put it on his shoulder, but as I got close to him, he grabbed my hand and brain avmsqueezed like he was never going to let go.

In that instant, I felt as if I’d found my rehab soulmate. I felt like someone understood how hard it was to get up every day and be positive, work very hard and just be generally “excellent” when there seems to little to feel good about.

One of the hardest parts of rehabilitation was that I just didn’t know what was going to happen. I had to go put as much into process as I could, with no guarantee of how much of my old life I was going to get back. It was exhausting and terrifying…and up until that moment, I’d been feeling very alone in those feelings, despite being surrounded by support.

All this passed through my mind in an instant, as did the sudden certainty that I was not alone in these uncomfortable feelings. To know this so deeply brought tears to my own eyes.

Michael only held my hand a couple of seconds, and said nothing. He then let go, wiped his eyes, and wheeled towards the door to go in for lunch. I might have met up with him a couple more times in occupational therapy after that, but we never spoke of that day on that porch, and it wasn’t long before he was walking out of the hospital with his wife for good.

Sometimes, when I see people snowmobiling, I wonder if he’s out on the trails. I like to think that he is.

Wednesday, 4 January 2012

Rick Santorum Misses Taking Iowa Caucus by 8 Votes

After my nightly viewing of "Big Bang Theory" last night, I turned to CNN to see how things were going over in Iowa.  I was very uncomfortable to see that the CNN entrance poll placed Rick Santorum in the top three.

For those that don't remember why the prospect of Rick Santorum as President both disgusts me and scares the hell out of  me, see my previous post about him:  http://www.girlwiththecane.com/rick-santorum/

Rick Santorum for the Win??

Discomfort turned to mild fear as the first precincts started reporting Santorum as coming in first. The cursing started when Ron Paul dropped to third overall and Santorum and Mitt Romney began to duke it out. I was a wreck during the last few hours when Santorum was in first place, with so few votes separating him from Romney.

And then, at the last moment, Romney took the caucus by eight votes, and I breathed a huge sigh of relief. But I never dreamed that Rick Santorum would come so close to winning. It scares me.

Same Stuff, Different Speech

I read the text of Santorum's speech to his supporters today.  It was a good speech. He's obviously personable and engaging and knows how to strike an emotional chord with people. He thanked his wife and mentioned all his children. But one got special attention:

"There’s another little girl who’s not here tonight. She is with a little button (ph). She’s our little angel. That’s Isabella Maria. Isabella Maria, we don’t take her out in crowds. She’s — has a disability. She has a disability that has, according to the records, the statistics, has a 1 percent chance of survival after one year. She is 31 / 2 years old. So Bella is here with us in spirit and is deeply embedded into my heart. People ask what motivates me. I say the dignity of every human life."

This is consistent with Rick Santorum's decision to use his daughter's disabilities in an emotionally manipulative way during his campaigning.

I'm Not the Only One That Thinks So...

@Indecision at Comedy Central tweeted last night: "Rick Santorum: I don't take my disabled daughter out in crowds. I just exploit her remotely."

I read a number of commentaries on what happened last night as I prepared to blog on this, and the one that really summed everything up for me was by William Peace of the "Bad Cripple" blog. I linked to him in my last Rick Santorum piece as well. Bill and I are obviously of  the same mind about Santorum: http://badcripple.blogspot.com/2012/01/santorum-victory-in-iowa-shocked-just.html

In the post to which I linked, Bill also does a commentary on Santorum's Thanksgiving interview about Bella that I talked about in my first post.

A commentary that I read today said that Rick Santorum doesn't have the resources or infrastructure to run a nationwide campaign. For the sake of people with disabilities, women, and people on any kind of social assistance...let's hope so.

Read the full transcript of Santorum's caucus speech at http://www.washingtonpost.com/blogs/election-2012/post/santorums-iowa-caucus-speech-full-text-and-video/2012/01/04/gIQA5Q1naP_blog.html

Tuesday, 3 January 2012

More on New York State Group Homes

In case anyone needs a review on what's been happening with New York State group homes for  people with developmental disabilities:

http://www.girlwiththecane.com/new_york_state group_homes/

New York State Group Homes in "The New York Times"

The latest article in the "Abused and Used" series in chronicling the abuse in New York State group homes appeared in "The New York Times" just before New Year's. The article focuses on one of the operators: Federation of Multicultural Operators of Brooklyn. The full text of the article is here:

http://www.nytimes.com/2011/12/28/nyregion/operator-of-ny-group-homes-thrived-despite-lapses-in-care.html?_r=2&adxnnl=1&adxnnlx=1325176919- Nhrsh5AFVgD828ev1jiW6w.

The financial history and hiring practices alone of the Federation are shocking enough. But the 27 citations for failing to meet health and safety standards in Federation's Intermediate Care Facilities (all issued between 2006 and 2010) would be, one would think enough to make New York State want to sever ties with this operator. C.E.O. Danny King, who is a retired police officer with no experience in the developmental services field before starting work with the Federation, doesn't seem concerned, according to the "Times".

Just an Observation

Working in the developmental services field, I've noticed that we're learning as we go along.  We thought that institutionalizing people with intellectual disabilities was the best thing for them for a while. Now we don't. Now we're becoming aware that even the best of community residential options brings up issues around rights and safety and how people in staffed homes should be interacting with the people they support. In the almost twenty years that I've been involved with agencies that support people with disabilities, I've seen ways of thinking come into favour and fall out of favour and settle in the middle and then move toward one side again.

I'm okay with working in a field where there a lot of "grey areas" and issues that need to be worked out. I don't tend to think in absolutes, and I've got a lot of patience. However...

No Patience or "Grey Areas" for New York State Group Homes

I do not see grey areas, and I have no patience, when it comes to people who violate the safety of vulnerable people and of animals.  Abused kids need to go to a safe place and parents should  have to go through a long, comprehensive rehabilitation process before they get them back (if it's ever appropriate).  People who abuse animals shouldn't be allowed to own pets.

And a service provider that receives 27 citations within 4 years for safety violations within housing (including the Federation's failure to investigate abuse, inadequate medical care, and medication errors), should simply not be allowed operate New York state group homes. Period.

The article says that this all started four decades ago with the state's decision to stop institutionalizing people with disabilities and a the lack of an oversight agency that could do proper and timely inspections of the group homes that people ended up in. Forty years is a long time not to have learned as they've gone along with this.  Particularly as the first small public group homes became multi-million corporations like the Federation, one would think that the state would have seen the need to put proper oversight and inspection procedures in place.

It makes me wonder, again, about how much society really values people with disabilities.

I keep seeing evidence that it doesn't, and that makes me sad.

See the archive for the "Abused and Used" series about the New York state group homes situation here: