Tag Archives | very cool people

I Stand With Henry

I’m back to the blog this weekend to talk about a self-advocate that I found out about this week, and to ask you to take five I stand with Henryminutes out of your schedule to let him know, “I stand with Henry!”

Self-Advocacy Rocks

I used to work with teens with intellectual disabilities. Some of them weren’t even aware when they started with my agency that they had any rights. A few from that same group left my program see me on the street now and are excited to tell me about the latest way in which they stood up for their rights.

It’s an amazing privilege, to work with someone on becoming a good self-advocate…to examine with them what that means, and to see it start to sink in. Seeing the person start to apply the skills in their lives – well, that’s a real “this is why I do this work” moment.

It takes courage to stand up for your rights, and practice – it’s a skill. I was always proud of the teens I worked with for trying, no matter how it turned it. I’ve had to do it myself as a person with disabilities, and it can be pretty daunting, even when you’re got support around you. I’m sure that I don’t have to tell many of you this.

Keeping all this is mind, you can understand why I stand with Henry, and why I think you should too.

I Stand With Henry…Do You?

Henry has the makings of an amazing disability self-advocate. A young man with autism, he’s non-verbal and uses a communication device. He wants you to know something:

Personally, I don’t see why he can’t go to his neighbourhood school. I stand with Henry.

If you do too, please show your support by leaving a comment on his video at YouTube, or on the blog that he wrote:

http://ollibean.com/2012/08/23/my-civil-rights/

There’s also a Facebook page:

https://www.facebook.com/IStandWithHenry

It takes a lot to put yourself out there like this. Let’s let Henry know that there are people who have heard his message and that agree that inclusion is the best way to go!

Have a great weekend…

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Business Profile: Anthony At Your Service (Delivery Service, Edmonton)

I mentioned on my blog entry on Monday that I’d come across a video that I wanted to post, but that I was still waiting for some information. I haven’t Anthony At Your Servicegot the information that I was looking for yet, but I’m going to post the video anyway…and I’d like to get your impressions on it. It’s about a young man with autism in Edmonton who has started his own delivery service: Anthony At Your Service.

Anthony At Your Service: Meet Anthony and His assistant, Mike

http://www.youtube.com/watch?v=Yv5nzgrYBIQ&feature=youtu.be

When my friend pointed me to this video, I watched it a couple of times, and thought, “This is the way that we should be supporting people with disabilities to set and meet their goals.”

Here’s why:

  • It’s flexible.
  • It’s person-centred.

Person-centred, flexible supports are effective supports.

I have a feeling that Mike isn’t an agency employee, but probably an independent worker paid for out of some sort of government funding (that was the information that I was trying to get). I’m wondering as individualized funding starts to become the funding model of choice in more and more places, whether people will choose to hire one-on-one workers as opposed to purchasing supports from agencies because agency programs are losing their ability to be flexible and easily responsive to peoples’ needs.

I have much, much more that I want to say about this…but I’ve tried to write this blog about ten times now, and I just can’t seem to easily get out what I want to say. So I’ll leave you today with some questions:

Does this strike you as a good way of supporting people with disabilities? Why or why not?

What did you think about Mike’s observations about the sounds that people make, versus the sounds that Anthony makes?

What do you like best about this video?

Would you use “Anthony At Your Service” if you lived in the Edmonton area?

Check out the “Anthony At Your Service” website: http://www.anthonyatyourservice.com/

P.S. If I was still working in social services, Mike’s job is exactly the sort of thing I’d like to be doing with people with disabilities. It’s a really, really exciting job to me.

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After My Stroke: My “Weak” Hand/Arm/Leg

Recovering From My Stroke: My “Weak” Left Side

stroke

Reading a post by Grace Carpenter over at “My Happy Stroke”, I was reminded by how much trouble I used to have with referring to my left side, the side affected by my stroke, as my “weak” side.

Trouble because it wasn’t just that my side had been made “weak” by my stroke. Right after my stroke, it had been been nearly paralysed, or so it had seemed to me. I remember doctors asking me to lift my leg from the bed, and only being able to lift both a couple of inches. The foot that had kept its strong arch and pointed toes from years of highland dancing and ballet classes lay shapeless despite my best efforts to make it do anything. And my left hand, when I tried to open my fingers, wanted to remain a clenched fist.

The Problem with “Weak”

As Grace points out, “weak” is a problematic descriptor when it’s used to captured the full spectrum of experience with a limb that’s affected by a stroke:

  1. Weakness – Weakness is part of it, yes. Twelve years after my stroke, my left leg is strong enough to support my weight only for very short periods (this is a relatively recent development) and my left arm isn’t strong enough to hold very much. I do heavy lifting with my right arm and use my left arm as a brace, for extra support.
  2. Spasticity – For a long time (years), my left arm and leg had a lot of what my physiotherapists called “tone”. My arm and leg shook sometimes, and my arm jumped when I was startled (I was fun in scary movies).
  3. Lack of Sensation – Once, when I fell, I broke the little finger on my left hand and didn’t realize it until I had an x-ray of my hand done to look into something else. I couldn’t feel it that I’d broken my finger.
  4. Lack of Proprioception – For a long time (years), if I closed my eyes and someone raised my left arm in the air, I wouldn’t be able to detect where it was. For all I knew, it could be just be a few inches from my side, or out at shoulder-level, or straight above my head.
  5. Neglect – I’m pretty good about not neglecting my left side now, but occasionally I’ll walk outside with my t-shirt hiked half up my left side, or I’ll not realize that my jacket has slipped off my left shoulder to my elbow. It used to happen much more than it does now, though.

I generally use the word “weak” to describe my left side, just because I haven’t come across an alternative that I like (well, on my less-than-good-days, I might say “bad”, but I don’t mean it.)

Grace is considering “gimpy” but there’s something that doesn’t sit quite right about that with me, either…but if it works for Grace, more power to her! :)

Anyway, if you watch the video at the end of Grace’s post, you can get an idea of how my left arm now moves. It looks as if we’ve got about the same amount of arm movement and control, but Grace definitely has more fine motor skills in her hand. I am not to the point where I can pick up cutlery with my hand; the more I try to move my fingers, the more they want to curl up into a fist.

I really like Grace’s blog. Go check it out: http://myhappystroke.blogspot.ca/

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“My Special Needs Child is Not a Burden on Society” – Love that Ellen Seidman!

I found a lovely post on Friday at http://www.lovethatmax.com, a blog by Ellen Seidman about life with her son Max. Max has cerebral palsy. He had a stroke just after he was born. I’m devouring Ellen Seidman’s blog, and it’s partly why I posted the blog that I did on Friday. That, and a discussion with Geoff that happened that same night. It had all got me thinking about things like equality, and opportunity, and contribution to society…and left me thoroughly muddled. Perhaps that’s why I didn’t sleep Thursday night.

(Geoff, if you’ll remember, is my Conservative Facebook friend with whom I argue politics. We’ve started to joke that if we agree on something, pigs must be flying somewhere. We did have a good discussion the other night, though, tempered by the influence of other Facebook friends much more intelligent than I am.)

Ellen Seidman has read this post and approved it. It was important to me that she did.

Burden to Society? Depends On How We Choose to View Max, Not His Ability Level. You Go, Ellen Seidman!

Ellen Seidman’s June 6 post, “My Child With Special Needs Is Not a Burden To Society”, talks about a perception that because Max’s needs are greater than those of some other children with disabilities, he’ll therefore make less of a contribution to society, and money to support him would be “better spent” on children with less severe disabilities who will make a “greater” contribution to society. A number of other parents commented that they’ve encountered the same attitudes about their children with disabilities. Ellen Seidman and the commenters got very emotional.

I can understand why. One of the things that’s annoyed me most as I’ve worked with people with disabilities is hearing from other people (sometimes in front of the person with whom I’ve been working, and sometimes from colleagues in the field) statements like:

  • “He’ll never do that. His disabilities are too severe.”
  • “She’ll never be able to do that. It’s too much for her to handle.”
  • “What’s the point of trying that? It’s too expensive/there’s not enough support/we need things that we don’t have .”
  • “That’d be too hard for her. We don’t want to set her up for failure.”

Usually, the comment on the tip of my tongue is, “Unless you’ve got a crystal ball that I don’t know about, you can’t see into the future to know what this person is and isn’t going to be able to do in life, and what contribution to society this person will make.”  I generally tone it down to,

  • “No one is ever going to know what he’s able to do, including him, if no one ever gives him a chance to try.”
  • “It’ll be a challenge, yes, but we’ll get a good plan together for her before we move forward with anything.”
  • “The point in trying is that he wants to try. It’s his dream; everyone has the right to a dream. Let’s assume that the resources are available and see how far we can get.”
  • “What’s the worst case scenario if she fails? She learns how to deal with failure. Everybody has to learn how to do that eventually.”

What Does “Contribution to Society” Have to Do With “Equality”?

So, last Thursday night, Geoff and Julie and I debated what “equality” meant when it came to people with disabilities. I got it down to “equal opportunity”, which thoroughly confused Geoff (and with good reason, as I was thinking of this graphic and substituting “equal” for “Fair” in my mind):

contribution to society

But I worked it out. I won’t go into the protracted train of thought that led there, especially after reading Ellen Seidman’s blog,  but it all became to me Friday when I was writing on tumblr:

“I’ve been thinking about this quote:  ”Fair isn’t everybody getting the same thing…fair is everyone getting what they need to succeed.”

But there’s an implication there that not everyone is equal. 

Maybe everyone is equal in that we’re all equally deserving of fair treatment?

Glad I worked that out…only took me all day…”

It’d be such a cool world if we could get it through our heads that everyone, regardless of ability level (or race, or gender, or sexual preference, or religion…you get the picture) is equally deserving of what they need to become what they consider successful (within limits, of course. I don’t think that society could in good conscience support people to become successful ax murderers).

But that’s not my point. I’m trying to say that even the people who look the least “successful” in society’s eyes still make a contribution to society in all sorts of ways and may be quite happy in life. So social support can’t be reserved for who has the potential to make the greatest contribution to society. If we’re truly all equal, we should truly be regarded as having limitless potential and the advantage of government systems that nurture it.

I’m looking forward to seeing how Max continues to contribute to society as he grows up. I hope that Ellen Seidman will keep blogging so that we can continue with her family on their journey. Do yourself a favour and go read the “My Child with Special Needs is Not a Burden to Society” post on Ellen Seidman’s blog: http://www.lovethatmax.com/2012/06/my-child-with-special-needs-is-not.html

What’s your greatest contribution to society?

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Music Therapy and Intellectual Disability

I once supported a young man with a severe intellectual disability, who was unable to roia rafieyancommunicate verbally, who cried every time he heard the Canadian national anthem. No one involved in his life knew why, and he unfortunately couldn’t tell us any in any other way. Something about that piece of music obviously touched him deeply, for better or for worse.  I don’t think that anyone would deny that music is powerful, least of all Music Therapist Roia Rafieyan.  I heard a fascinating interview with Roia on Friday about her work with individuals with intellectual disabilities.

Roia Rafieyan’s Work

Roia Rafieyan is a music therapist in a state institution for people with intellectual disabilities. Many of the people that she supports are on the autism spectrum and don’t communicate verbally, yet come to her with deep issues like abandonment or trauma, and it’s difficult to establish a therapeutic relationship. Roia uses a therapeutic approach called “object relations” to work with clients through song and music.

Object relations is very process-oriented. Clients have goals, such as learning to indicate appropriately when they want to end a session, or making eye contact. Ultimately, however, therapy is more about building the relationship between the therapist, client and the music. Ideally, people will want eventually want to engage in any goal behaviours because they’re in a relationship that means something to them.

Roia uses singing and music to let people know that she’s listening to what they have to say, and to give people ways to respond to her. She gives choices about what their responses can be: “If you’d like to continue, look at me, and if you’d like to do something else, tell me with your voice.” She talks about having a conversation with a person who doesn’t communicate verbally with her in session, but with bells.

Person-Centred in a Non-Person-Centred Environment

I think what really delights me about Roia Rafieyan’s work in the context in which she does is that it’s very person-centred. It puts the client and their needs at the centre of the session and lets them make choices, which is the essence of person-centred planning in any context. She talks about how life in an institution is usually “Do this” instead of “What would you like to do?”, and about how being in dialogue with someone else is often a new experience for the people with whom she works. Roia says that she has to model “dialogue” and show people what’s involved with it.

Roia’s work in an institutional setting gives people who don’t get much choice in their daily routine or opportunity to express themselves to be in control of their experience for a brief period. The fact that Roia *does* cultivate relationships with people and be in dialogue with her clients in a testament to how powerful her person-centred approach actually is. The key to this powerful approach is careful listening, which Roia says is 95% of her job.

“I think our clients really understand a heck of a lot more than they’re able to convey to people,” Roia says.

I find Roia’s approach very intuitive, and her work is very exciting to me.  She obviously has a deep respect for her clients and a passion for her work, and it’s so interesting to hear her speak about what she does. I’ve only touched on the interview’s major points here. It’s really worth a listen. http://www.blogtalkradio.com/mtshow/2012/04/27/music-therapy-and-speech

Roia Rafieyan’s blog: http://mindfulmusictherapist.blogspot.ca/

Roia Rafieyan’s music site: http://www.roiamusic.com/

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Way to Go, Noah Wyle…I’ve Always Liked Those “ER” Docs…

And no, I’m not just talking about the fact that they were all *very* easy on the eyes. ;) I’ve always had a great deal of respect for George Clooney’s activist work, and it looks as if his co-star Noah Wyle is following in his footsteps.

Noah Wyle was arrested at a protest on Capitol Hill on Monday. He’d joined other ADAPT members to protest Medicaid cuts that will reduce in-home medical services for people with disabilities. One hundred other protesters were arrested along with Noah Wyle.

http://www.latimes.com/entertainment/gossip/la-et-mg-noah-wyle-arrested-protest-dc,0,7277200.story

ADAPT originally stood for “Americans Disabled for Accessible Public Transit”, but the organization’s mandate has spread far beyond transportation in recent years.  Grassroots

Noah Wyle

Going to the protest…

advocacy for effective community supports for people with disabilities is now it’s major focus. ADAPT’s achievements include:

  •  Developing the Medicaid Community Attendant Services and Supports Act, to get people with disabilities out of nursing homes and institutions and receiving medical services in community residential settings. Now known as the Community Choice Act.
  • Working to make sure that states receive funds from Money Follows the Person
  • Developing the Access Across America campaign for housing for people with disabilities
  • Training chapter leaders
  • Operating two national bases in the United States
  • Publishing a quarterly newsletter

But Back to Noah Wyle

I really admire celebrities, who obviously have a lot invested in maintaining a certain image, who are willing to take a risk and stand up for their beliefs (and Noah Wyle is currently acting in a TV series, “Falling Skies”). Susan Sarandon and Tim Robbins are two other working actors that do a lot of activist work that spring to mind.

Obviously any volunteer’s time and energy is valuable for a non-profit energy struggling to get its energy out there…and it’s amazing when you find people committed enough to a cause to be arrested for it…but it doesn’t get in the news when us Regular Joes get arrested.  A star willing to get arrested for a cause – that gets us in the news.  Noah Wyle was aware that he could get arrested, and he went through with this anyway, and that restores a bit of my faith in Hollywood.  Thank you, Noah.

And Thank You To Others That Have a Lot To Lose

And, as a person who would like to work in social services again and could therefore have a lot to lose from an arrest, I’d like to thank the teachers, social workers, health care workers, etc., that undoubtedly show up at protests like these. I know what you’re potentially risking for your beliefs. You truly rock. :)

ADAPT is taking National Action in Washington, D.C. until April 26, if anyone still wants to join.

More about ADAPT: http://www.adapt.org/

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Annie Clark Wins Penmanship Award by Writing with her Forearms

Annie Clark of Pittsburgh, seven years old, says that she was “Not really scared” but “kind Annie Clarkof” when she accepted the Nicholas Maxim Award. She is one of two students to receive the prize, awarded for the first time this year by educational publisher Zaner-Bloser Inc., to students with disabilities for exemplary penmanship.

Clark was born without hands. She writes with her pencil between her forearms. Her adoptive parents, Mary Ellen and Tom Clark, couldn’t be prouder of her, and hope that this experience reinforces to her that she can do anything.

Annie Clark Already Does A Great Deal

Mary Ellen may worry that Annie sometimes wishes for hands, but we must remember that Annie is only seven years old and surrounded by “abled” peers. She may not recognize how remarkable it is that she gets along so well with no hands.

Annie uses her forearms to feed and dress herself and even paint her toenails. “In addition to writing, she paints, draws and colors. She plays the board game Battleship and swims. She dresses herself and opens cans of soda pop. She uses her iPod Touch and computers without assistance,” says TribLive.com

Annie’s school didn’t know that the Zaner-Bloser competition had a division for students with disabilities. Annie won penmanship award for her entire school. It was only when her name was forwarded to the state level that the contest officials suggested that she be put in the division for children with disabilities.

I’m curious to know whether Annie was offered the opportunity to compete with the other students who won first prize at their schools. If so, which option was she encouraged to take, and by whom? If not, why does the presence of a disability automatically mean that she was labelled and put into a certain class of competition, regardless of her ability level?

Not That Having a Disability or Annie Clark Competing in that Division is A Bad Thing…

Or that it should take away from her victory in any way.

Perhaps her parents thought that being in the disability division was the better option for her.

Perhaps Annie Clark wanted to be in the disability division.

But if Zaner-Bloser compelled Annie Clark or her family to put her in the disability division – shame on them. They should have known that she deserved to to compete with the other students who had come first at their schools, regardless of her disability.

USA Today Article:

http://content.usatoday.com/communities/ondeadline/post/2012/04/girl-born-with-no-hands-wins-national-penmanship-awards/1#.T5EvorNrOa8

TribLive News Article:

http://www.pittsburghlive.com/x/pittsburghtrib/news/s_791920.html

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Book Review: “The Four Walls of My Freedom”

My family’s Easter was quiet this year, and a damaged router cord meant no Internet access for the weekend.The Four Walls of My Freedom So I spent Easter Sunday and Monday reading a book that I believe is very important: The Four Walls of My Freedom.

As promised last week, here is my review of Donna Thomson’s The Four Walls of My Freedom.

Girl With The Cane Book Review: The Four Walls of My Freedom

Donna Thomson’s The Four Walls of My Freedom (McArthur and Co., 2010) is a must-read for anyone involved in the disabilities field.

Thomson’s 263-page work (including acknowledgments, appendices, endnotes, bibliography and index) is fascinating firstly because it’s part memoir. Thomson and her husband Jim Wright are parents to daughter Natalie and son Nicholas, who has cerebral palsy. The Wrights’ story of raising Nicholas will be all-too-familiar to many families: struggles to get him properly diagnosed and find effective early intervention, finding public schools that were willing to take him as a student, securing funding for respite, personal development, and future planning, dealing with his severe health issues and constant pain, balancing his needs with Natalie’s as best as they could, and trying to avoid burnout themselves as caregivers. All of this as Jim worked in high-profile diplomatic posts with the Canadian government that required a family move to London from 1992 to 1996, and again from 2006 to 2012.

Thomson’s narrative is by turns moving, gently humourous, heart-breaking, and, in the case of her account of Nichloas’ first hip surgery, horrifying.  A deep passion underlies all her writing about Nicholas and her family, however.  Her dedication to making sure that Nicholas, now in his twenties, is living the life that he wants to live, enriched by relationships with people of his choosing and activities in which he finds fulfillment, is palpable from the first page.

Thomson’s perspective as the mother of a child with severe disabilities gives her other voice in The Four Walls of My Freedom a powerful authority.  Interspersing her insights with her family narrative, Thomson examines the current modes of thinking underlying support for people with disabilities from a justice perspective. She suggests reshaping them according them to economic philosopher Amartya Sen’s Capability Approach, most typically applied to people living in poverty.  She deserves major intellectual kudos for tackling traditionally “thorny” philosophical issues such as what gives a person’s life value, what makes them “worthy” of receiving supports and services, and what constitutes “contribution to society”, and for backing up her arguments with the work of philosophers also currently asking these questions.

Thomson’s discussion of specific disability supports focuses mainly on those in Ontario, Canada, where Nicholas spent most of his life and now lives. However, her loving description of the life that Nicholas lives now, made possible largely in part by applying her general philosophies regarding support for people with disabilities in general, paint a picture of possibility and empowerment for both Nicholas and his family that needs to be recreated everywhere. Nicholas, who uses machines to breathe, eat and talk, chooses to spend most of his time in bed. After years of participating in adaptive sports and extracurricular activities at his schools and enjoying face-to-face contact with students his own age and his teachers, he now prefers the virtual worlds of his computer, his eBay business, online courses and the company of family and support workers. He can access all of these from his room and his bed, the physical space where he can remain most consistently free from the intense physical pain that still plagues him despite surgical interventions and heavy medication.  It’s perhaps not the life that you would choose. But it’s the life that Nicholas chooses. Thomson shows compellingly that this is what truly matters to her and should matter to us.

Anyone who works with people with disabilities knows that it’s no easy task, to assist someone who faces the challenges that Nicholas does to construct a life of their choosing. The joy of The Four Walls of My Freedom is Thomson’s seemingly unwavering faith as she and her husband raised Nicholas that it could be done, that it must be done, and that all people with disabilities must have the resources to effectively do it as well. To this end, she discusses new directions for planning and support policies, such as support facilitated through personal networks and individualized funding that is not dependent on government funding (her discussion of the Planned Lifestyle Advocate Network covers these topics extensively), income support mechanisms that allow people with disabilities to save money for the future (such as Ontario’s Registered Disability Savings Plan), and provisions by government, through changes in the tax code and in regulations surrounding residential placement options for people with severe disabilities, to allow carers to eventually retire and people with disabilities to access a greater degree of personal autonomy. It’s worth noting that she believes that these service innovations could also innovate and invigorate care for the elderly.

Thought-provoking, engaging, and very touching, The Four Walls of My Freedom shows us the next steps to ensuring that people with disabilities get the person-centred support that they need to have what the rest of take for granted: fulfilling lives, enriched by relationships and activities that we enjoy, with access to our communities in ways that we choose, with our safety and dignity reasonably ensured. In a just society, no one deserves anything less.

The Four Walls of My Freedom is available on Amazon everywhere. The paperback is due for release in May, 2012.

Donna Thomson’s website: http://donnathomson.blogspot.ca/p/welcome.html

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I Don’t Need Easy – Julianna Russell

I love working with teenagers. Granted, sometimes their behaviour sometimes frustrate the hell out of me, buJulianna Russelllt we need to remember that even in the healthiest of teenagers, their brains don’t fully develop until their mid-twenties. It makes the achievements of teens like Julianna Russell stand out even more.

Julianna is another person whose achievements need celebrating this International Developmental Disabilities Month. Born with spina bifida, at age 16 she discovered that she didn’t have enough feeling in her legs to operate the pedals in a car. However, determined to get her driver’s license, she researched her options on the Internet. After taking an adapted driving course and having her car outfitted with hand controls, she was able to get her license.

She also started her own website, I Don’t Need Easy, to share with other youth with disabilities how she did it and to give them a place to network and share other experiences of growing up with disabilities.

http://www.ledger-enquirer.com/2012/03/25/1983570/teen-creates-website-to-help-other.html

Relating to Julianna Russell

When I read Julianna Russell’s story, I thought she was wonderfully brave.

I got my driver’s license at 16 without any problem. But after my brain surgery, I started having seizures. The surgery left some scar tissue that just sent my brain into spasms. The first little while they were large seizures that came on with little warning (although I could usually say within a couple of days that one was coming on) and caused me to lose consciousness. Gradually, as my doctors fine-tuned my medications, the seizures became rarer and rarer – but I’d be awake through them as they happened. Eventually they became tremors my arm or leg so small that no one but me knew that anything was happening. It was at that point that my neurologist declared that I could start thinking about driving again, and wrote a letter to the Ministry of Transportation for me.

But by that point I’d been over a decade without a license. It was a terrible drain on my independence, yes. My town had no public transportation. I had to rely on taxis and the good nature of others to get anywhere outside of town. Having no license put me out of the running for most jobs in social services in the area. But I sat on the letter and the opportunity to start getting my license back…for far too long…and I’m not really sure why.

I knew I’d have to start all over again after such a long period without driving, but that didn’t *really* bother me. Something else was holding me back and, like I said, I’m not sure what it was. I have the first stage of my license now, though, and will be able to take my full driver’s test in February 2012.

But I can relate to wanting the independence of being able to drive oneself around, instead of relying on other people. Kudos to Julianna Russell for finding a way to get her license and for using her talent and abilities to share with others how she did it! I actually used her site to investigate adaptations to car steering wheels.

I Don’t Need Easy

Julianna Russell’s website is here: http://hstrial-dischallenges.homestead.com/index.html

It’s obviously just getting started, and hopefully she’ll get some more people post some stories. But for people (not just necessarily teens) with disabilities that want to drive and the people that are going to be helping them, it’s a good place to start getting information. Great job, Julianna Russell! Keep it up!

 

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Celebrating Developmental Disabilities Month with Inspirational Stories

developmental disabilities month

What makes a home?

Developmental Disabilities Month: What is “Worth” Celebrating?

Today I spent a lot of time searching the Internet for another story like Dr. Jan Brunstrom’s to blog on, as part of my continuing celebration of Developmental Disabilities Month. I know they’re out there.

But today my search skills just weren’t up to par and my Google search alert for news stories about disability just hadn’t sent me what I’d asked for. I could find lots of stuff about Developmental Disabilities Month, but I couldn’t find anything even approaching what I wanted to blog about: a story of a person with a developmental disability in a highly-respected profession, making a contribution to society that was going to make people really think about the assumptions that they held about about the capabilities of people with developmental disabilities.

In the process, I completely dismissed a story about a ninety-year-old woman with a developmental disability who’d made a new life for herself in a community home after spending most of her life in an institution. And later on in the day, that decision really caused me to think: Had I overlooked something that really *was* something that I wanted to blog about for Developmental Disabilities Month?

Life in the Institutions: A Bit of Background for Our Developmental Disabilitites Month Discussion

It wasn’t so long ago that babies with developmental and/or intellectual disabilities were given a very grim prognosis. Doctors told families that the best way to deal with these children was to institutionalize them. The institutions weren’t nice places.

Senator Robert Kennedy called the Willowbrook State School, an institution on Staten Island, a “snake pit” in 1965. At that point it was housing more than 2000 residents than it was supposed to, and some residents were being deliberately infected with hepatitis in order to find out more about the disease. Nothing was done about the deplorable conditions at Willowbrook, however, until Geraldo Rivera did a documentary in 1972 about what was happening behind the institution’s wall. There’s footage from the profile on the bottom of the “Home” tab at http://willowbrookstateschool.blogspot.com/ but be warned, it’s very difficult to watch.

There’s also an account on the same web page from a former resident of what life was like at Willowbrook State School (on the “A Voice Behind the Wall – A Look at Life Inside Willowbrook” tab) which is also quite eye-opening, but again difficult to read.

Familiar Stories

I recognize elements from the Willowbrook stories from stories that I’ve heard from stories about institutions in Canada during that period: abuse of all kinds, not allowing residents to have possessions, the lack of privacy and certainly the lack of dignity in the supports. I’ve seen people who used to live in institutions wolf down their meals, and been told it’s because if you didn’t eat your food fast in the institutions, you often got it taken away from you before you finished.

Institutional care, where is still exists (Ontario’s institutions are closed, and most American states are moving in that direction; New Hampshire has closed all its institutions) had to move past this dark era and stop these abuses in order to keep operating. But that’s not to say that abuses still don’t happen. Additionally, from a disability standpoint, it’s very problematic that people are still, in effect, warehoused in places where their opportunities for self-determination, community integration, and opportunities for building a fulfilling life are inherently (and severely) limited.

Celebrating Their Success

As I said, I’ve known people who lived in institutions. When they had to leave, some of them had been there many, many years. Some of them didn’t have any family left, or had never known their family, so they went to live in community homes in towns where they didn’t know anybody. They built lives, with the help of agency and natural supports, that were 180 degrees different than what they’d known in the institutions.

Even when change like that is totally for the better, it’s very stressful. And when I think about what sorts of traumas some of these people may have endured in the institutions, that they may not even have the skills to even properly process, let alone communicate to others…I often wonder how they do as well as they do in their volunteer work and paid jobs and various types of living situations (from group home right up the spectrum to independent living).

Celebrate *All* Achievements During Developmental Disabilities Month

We certainly need to celebrate people like Dr. Jan Brunstrom during Developmental Disabilities Month. She does such wonderful work, and I want to find more people like her to blog about before Developmental Disabilities Month is over.

But we also need to celebrate the very real achievements of people with developmental disabilities who are thriving in spite of being part of some of the very worst that society has thrown at that demographic. They’re still here – that’s pretty darn amazing. Certainly worthy of inclusion in Developmental Disabilities month celebrations. I forgot about that this morning.

So, in light of that realization I came to today, and in further celebration of Developmental Disabilities month, here’s the article about Virginia Hinson,  the 90-year-old woman that I glossed over this morning because her achievements didn’t seem dramatic enough. My apologies to her.

http://www.voaky.org/Content-Conversion/DELETE/Sucess-Stories/Developmental-Disability-Success-Story

 

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