Tag Archives | invisible disability

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 bob marshallchoose 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.

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Cultures of Inclusion

As we move into a society where creating cultures of inclusion for people with disabilitiescultures of inclusion 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:

http://www.headsupforinclusion.ca/index.php?option=com_content&view=article&id=3&Itemid=5

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.

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I Support the Spartacus Report

http://diaryofabenefitscrounger.blogspot.com/2012/01/i-support-spartacus-report.html

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.

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“My Princess Boy” and My Christmas Wish for the World

I saw a wonderful segment on Dr. Phil’s episode on “Radical Parenting” today. Cheryl Kilodavis talked about her son Dyson and how his love for all things pink and pretty inspired her to write “My Princess Boy”, a book on the importance of accepting differences.

A Little Boy in a Dress

Kilodavis talked about how Dyson, now five, had been interested in sparkle and glitter and dresses from age two. They showed several pictures of him in dresses over his jeans as he played sports, and a video of him showing his three most favourite dresses. He’s an adorable little boy, and clearly seems happy, social and active. Kilodavis said that the doctors that they’d taken Dyson to had told her and her husband that he was a very healthy, well-adjusted little boy, and not to over-encourage the fascination with dresses…but not to discourage it, either. In light of that, the Kilodavis’ decided to support Dyson’s preferences, whatever they happened to be in that moment. If they changed later on, they’d support those too. They would be adults that their son could count on to guide him to be the best that he could be…however he chose to dress.

People Fear “Different”

I like Dr. Phil because he’s very committed to child welfare and because he has taken bullying on as a personal cause. In the interview with Kilodavis, he identified people who are “different” (specifically, people of a “different” ethnicity, who have disabilities or who are struggling with GLBTT issues) as the most common targets for bullying behaviour. I found Kilodavis’ opinion that kids are becoming such bullies because adults are modelling bullying behaviour really intriguing. I was also deeply touched by how she talked about that she’s just trying to support her little boy, who’s secure and happy with who he is, and trying to give others tools to do the same thing, hoping that they’ll say, “Yes, we will.”

Dr. Phil seemed to think that “My Princess Boy” would go a long way toward helping children learn about accepting differences. I will be buying a copy of it for my personal library.

“My Princess Boy” and Other Beautiful People

Between personal experience, experiences of people that I’ve supported, experiences of friends and of their children, and even the experiences of children (and adults) that I hear on the news, I feel like bullying, hate speech and hate crime has taken too much of me. I feel like it’s taken too much of us as a society.

My Christmas wish is that everyone finds people that will say “Yes, we will” while the rest of the world is smartening up about learning to accept differences. Because life’s a lot more pleasant when you’ve got people around you who will love you unconditionally while you’re just being who you are.

Thank you to the Kilodavis family for what they do to educate people about the importance of celebrating our differences.

More on “My Princess Boy” here: http://www.myprincessboy.com/index.asp

Interview with Dr. Phil about “My Princess Boy”: http://www.drphil.com/slideshows/slideshow/6479/?id=6479&slide=0&showID=1694&preview=&versionID=

I’ll see you after Christmas. Happy Holidays to you and yours. :)

my princess boy

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Changing the World One Step at a Time

So, recently I’ve been watching a 2005 PBS documentary series from Netflix-on Demand about thechanging the world Holocaust. It’s called  “Auschwitz: Inside the Nazi State”.

Because I’m Really Into Fun Television

As you might expect, a documentary series about the history of Auschwitz isn’t exactly…uplifting. I’m not even sure what prompted me to start watching the series in the first place, as Holocaust informational material really disturbs my “no evil people, just evil acts” philosophy of life and ultimately distresses me. My sister visited Auschwitz on her tour of Europe and didn’t really want to talk about it when she returned. I don’t know if I could go there. I think the energy of the place would be too much for me.

I can’t get my head or my heart around the Holocaust.  I can’t even begin to fathom the horrors that people lived through, and what made their captors hate so much that they could put others through those horrors. I listen to the survivor interviews, and think, “How do you cope with carrying all that?”

And the thought, “I’m ashamed to be human,” has passed through my mind.

Don’t Want to be the Same Species As Such Horrible People

It’s  not the first time I’ve pondered those things. I’ve thought them in response to hearing about hate killings of people because of their sexuality, such as Matthew Shepard. I’ve thought them hearing about acts of racism that people have faced over the years. I’ve even thought them in work, hearing about abuses that people with disabilities have had to endure from caregivers and supports (both paid and non-paid).

I’d like to believe that people aren’t evil. But some days it’s hard. And in my work, some days it feels like we’re a very, very long way from a society where people with disabilities are respected and regarded as equals.

Some days it gets easy to ask myself, “What’s the point? We’ll never get there…”

Another Perspective

I finished the fifth documentary yesterday, and one of the comments from the panel discussion is what has brought me here. Jerry Fowler, who worked for the United States Holocaust Memorial Museum in Washington D.C. when the documentaries aired, said that from the Museum you can see the Jefferson Memorial. The Declaration of Independence is written on the walls of that memorial:  “All men are created equal”. Yet at the time the Declaration of Independence was written, Fowler observes, men owned slaves, and would for another century. For another century after that, there was legalized discrimination.

But “All men created equal” was a beautiful sentiment, even it wasn’t true when it was written, and it was definitely worth working toward…and still working toward today.  It would have been very easy at any given point in those next 200 years of legalized racism, “What does this mean for us, when it’s so obviously not true?”  However, it’s an idea that belongs in a space where everyone can see it and work toward it…even if getting there takes a long, long time.

(These are a paraphrase of Fowler’s words…Netflix won’t let me rewind this one and I actually had to let the documentary play through again to get to the interview a second time).

Changing the World

He was responding in general to a question about why we still seem reluctant to help countries that are struggling with genocide, even after all the lessons the West learned from its slow response to the Holocaust. I was encouraged by his idea that we need to be heartened by even the slow progress that humanity makes toward the ideal. I like the idea that the ideal *is* working toward, no matter how far away it seems.

On my bad days, when I ask myself why I and other disability advocates bother, I’ll try to remember his words and think of just one step that I can take that day to get us a bit closer to the world I’d like to see…even if it’s just a note to another disability advocate to say how much I appreciate their work…

Maybe that’s the real key to changing the world. One little step at a time.

 

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Filing taxes for social service eligibility = more people falling through the cracks?

I was talking with a social services provider today about current eligibility standards for variousfiling taxes Ontario social services programs. I mentioned new eligibility criteria that I’d come across for a particular service, and she said that she’d heard rumours that it may become part of eligibility criteria for the sector in which she works: filing taxes.

Makes sense, right? Taxes pay for social services…shouldn’t people who use social services pay taxes and contribute to the funding of these services?

Ideally, yes. But the idea of making social service eligibility contingent on filing taxes troubles me.

Just Because People Aren’t Filing Taxes Doesn’t Necessarily Mean that They Are Trying to “Get Something For Nothing”

I know that there are people are out there who are avoiding filing taxes. I know that people have a number of reasons for doing so. I’m concerned that if receiving social services becomes contingent on filing taxes, people with disabilities who may not understand the importance of filing their taxes each year, such as someone with an intellectual disability or someone with a mental disorder, may be ineligible for services that they need. Not everyone with these disabilities has supportive family or friends to assist them with filing taxes, and government cutbacks to agency supports means that sometimes people may not have a support worker to assist them either.

A Step in the Wrong Direction

Social services eligibility criteria requiring someone to file taxes penalizes people who already may be very vulnerable, and potentially removes the opportunity to receive support from people who may be very badly in need of it already.

It’s not a good way to go. Hearing that at least one Ontario service that I know have has gone this way and that another may go the same way made me feel sad and disappointed. We can do better for the vulnerable people in our society.

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Tales of Online Dating

I was browsing through some links on Twitter  last night, and I saw one about a “diabetesonline dating ‘dating service’”. My first thought was, “Not this again.”

A Diabetes Dating Service? Because People with Diabetes Should Just Date Each Other?

I checked out the link, and it was actually about a program to link diabetes researchers with people who actually have diabetes (which is apparently a bigger problem than most people think it is). But the link had brought me back to the days, not long after I’d moved into my own apartment, when I joined an online dating site specifically for people who have disabilities.

An Online Dating Site? Because People with Disabilities Should Just Date Each Other?

At the time, I was looking for at least a penpal who understood what it was like to be recovering from a stroke. I did find someone. We only emailed, but he was super-intense and moved way too fast and seemed to think that we were destined to be together forever after a few emails – where we primarily talked about how we’d both had strokes and how we were both dealing with them now.

I stopped communication and didn’t go back to the online dating website. Something besides his intense behaviour had made me skittish. I didn’t realize then that it was what would largely form the basis for my peeve about grouping people with disabilities together. I’d talked for years in training and with colleagues about how society tended to assume that disability in common was something on which people could build a friendship or even a relationship, but I hadn’t realized until then how…short-sighted that was.

More in Common with the Able-Bodied People in a Group than with the People with Disabilities

Knowing what I do about online dating now, I feel now like I walked away from the online dating website having more in common with your average able-bodied online dater than the guy who’d had the stroke to whom I’d been talking – there are a lot of people out there who have gotten involved with someone on an online dating website and had them get way too serious way too quickly – like say “I love you” after three emails. It could be a story from any dating site.

And the one guy that I did meet, admittedly not on one of the more major dating sites, but on an advice site associated with it, who’d also had a stroke at an early age – we’ve been long-distance friends for three years and we rarely talk about stroke stuff. We’ve got other things in common to talk about.

Choice Choice Choice!

Now, I’m not saying that there isn’t a place for an online dating web site just for people with disabilities. I’ve said it before and I’ll say it again – there’s nothing wrong with people preferring, and choosing to try to find, the company of other people who share their experiences. Sometimes it’s difficult for people who haven’t “been there” to understand the experience of having a disability, so I understand why people with disabilities might use a dating site where they have a better chance of finding someone else with disabilities. But note I said “choosing” earlier. Again and again, it all comes back to people having options. And thank goodness, this is an area where we do – no dating site is ever going to try to say, “Disabled people need not apply”.

Just a Little Bit of Who I Am

For me, the thing is…a disability is only a part of who a person is. It’s something that two people may have in common who are different in absolutely every other way – and totally wrong for each other. And that’s why I never went back to the dating site for people with disabilities.

Because, good or bad, I’m more than just someone who had a stroke. I’ve had to fight hard to get people to see that, and going back to a dating site that encourages people to look at me first as a person with disabilities feels like a step back.

Have a great weekend!

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Open Letter As Election Approaches: Children’s Aid Society

“Children’s Aid Needs Aid”

http://www.orleansstar.ca/News/Local/2011-09-22/article-2755531/Children%26rsquo%3Bs-Aid-Society-needs-aid/1

As some of you may know, Ontario is going to elect a new Premier in October. I have some anotherchildren's aid society concern about youth with disabilities (separate from the one about about funding, about which I’ve already spoken to my Member of Provincial Parliament).

Talking to the Politicians

Dear Electoral Candidate,

As the election approaches, I feel the need to speak to you about child protection in the province.

I realize that the Children’s Aid Society and the Catholic Children’s Aid Society provide protection for children and youth up until the age of 16 (and thank goodness for that!) At 16 many teens can handle finding alternate accommodation with a friend or relative if a home situation is still abusive, or even handle independent living if truly necessary.

For teens with physical and/or intellectual disabilities, or a dual diagnosis of a, intellectual disability and a mental condition or an addiction, it’s often not so easy. Their needs may make it less likely that people will take them in, and they may not have the skills that they need to live independently. Unless they’re coming directly from a Children’s Aid situation where they’ve been a Crown Ward, they can’t access the the Extended Care and Maintenance program that would allow them to keep receiving CAS support up to age 21, and they’re not eligible for Adult Protective Services until age 18. That leaves many youth with disabilities in a situation where, while they can access other social services to potentially make the time at home easier, they can’t access protection services for two years. That’s a long time to live in an abusive situation where you don’t have the means, skills, or power to get yourself out, especially if you simply don’t know how to find the resources that you need.

It wouldn’t only only be youth with disabilities in this group. Some non-disabled youth leaving Children’s Aid not as Crown Wards are going to need protection for another couple of years just because of their situation as well.  Not everyone is confident about handling life and adult decisions at age 16.

Please raise Children’s Aid’s funding so that it can adequately meet the needs of children and youth  in Ontario that need it, right up until adult services kick in at age 18. An investment in our children’s safety in an investment in their future, Ontario’s, and Canada’s.  This really needs to be a priority. I’d gladly endorse the party that commits to addressing this within the next four years.

Sincerely,

Sarah Levis

So That’s It

I’ve been thinking about this one for a long time.

I need to find some stamps…

Have a great weekend. :)

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Questions about Assault…

People with disabilities are much more vulnerable to assault, especially sexual assault than their non-disabled peers.

Stats Don’t Lie

After all, consider these 2006 statistics from the Disabled Womens’ Network Ontario:

  • The risk of sexual abuse of people with disabilities appears to be at least 150% of that of individuals of the same sex and similar age without disabilities.
  • It is estimated that only 20% of sexual abuse cases involving disabled people are ever reported to the police, community service agencies, or other authorities.

And this one from L. Stimpson’s and M. Best’s “Courage Above All: Sexual Assault Againt Women with Disabilities”, 1991:

  • 83% of women with disabilities will be sexually assaulted during their lifetime.

“When I was Young and Foolish…

Before the stroke, I  know I put myself in risky situations when there was no need.. I knew during university and college that I should use the Walkhome services, but I rarely did. At first I just couldn’t be bothered, but as the years progressed I really just didn’t want to feel like a victim. I told me friend Carol, “I’ve never been followed,”

“That you know of,” she said, and of course she was right. It still didn’t make me use the walkhome services any more frequently, though.

Reconsidering

After my stroke, I did start to get some unwanted attention from men. From one man, it was scarily unwanted, and forced me to start thinking about things like, “How far would you go if you felt threatened? What’s your safety plan?”

He wasn’t dangerous. He had issues, yes, but when I finally got the guts to firmly set boundaries with him about how I didn’t want him near me, and didn’t want him trying to talk to me or call me, and that I’d get authorities involved if he did, he left me alone.

I think that some of the attention I get from men definitely comes from a personality type that sees the cane and thinks, “There’s someone that needs me to take of her.” But I can spot that dynamic forming pretty quickly, and politely put the brakes on it – I don’t need someone to take care of me, and the man who’s not willing to look at me as anything more than that is just going to be disappointed by me anyway. But honestly, I think that the reason I get more attention from men now has very little to do with my disability:

I walk with a confidence now. I don’t look down anymore.

I look people (even men!) in the eye and smile.

I’m less shy. I like talking to people.

Before the stroke…self-confidence didn’t come so easily. I know it’s strange that now, with a cane and disabilities, it has…but maybe I’ll talk about that another time.

In Light of Stats on Assault on People with Disabilities…

I’m much more careful than I used to be about being in public by myself, particularly at night. I’ve heard enough statistics about women with disabilities and assault (and women and assault in general) that I don’t want to become one of them.  There’s making a point – and taking needless risk.  I don’t like to think that I live in fear, but I really was scared by what happened with that guy, and it was very mild as these things go…but it took me a long time to feel safe again.

So, lesson learned. Safety first. Take appropriate precautions for yourselves out there, and teach the young people in your life to do the same, especially ones with disabilities.

Because the stats I quoted are disturbing on several levels:

What is it about a person with a disability that makes the probability of he/she getting assaulted so much higher? Isassault it a perception that they are more easily overpowered? Is it a lower level of respect for their humanity? Is there a (apparently correct perception) perception that they are less likely to “tell”, or easier to bully into not telling? When I hear that that Johnson and Sigler’s research in 2000 reported that as many as 83% of women and 32% of men with developmental disabilities are victims of sexual assault, it makes me think it’s a combination of all of them, and that’s just not acceptable.

Why aren’t people with disabilities who have been assaulted telling the authorities about it? Are people not taking them seriously? Are they being properly educated on what assault is? Do they value themselves enough to tell? Do they have enough information on what would happen to separate the scare tactic of an assaulter from what would really happen if they went to the police?

Again, not acceptable. But it’s the way life is right now.  So we owe it to the people with disabilities in our lives to have these conversations abuse and assault so that they know exactly what they need to do if it happens to them. I’ve told youth that I’ve worked with to find one adult that they could trust to tell – a teacher, a parent, an adult, a worker –  and that the adult would help them with the decisions from there.  This approach won’t always work. But I believe that it works more often than not.

I got the statistics for this post from a sheet prepared by the Ottawa Rape Crisis Centre: http://orcc.net/PDF/factsheets/Sexual-Assault-Statistics-FS.pdf

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I’m Not Sick

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

Disability: Illness to be “Cured”?

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

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

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

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

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

No, I don’t, I thought.

Today…

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

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

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

Not Sick

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

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

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

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

http://www.ruthmadison.com/the-trouble-with-cure/

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

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