About Sarah

Due to a stroke, I've walked with a cane since I was 22 (I'm 36 now)...but I'm so much more than just the girl with the cane.

Author Archive | Sarah

Nancy Fitzmaurice, Assisted Suicide, and Assumptions

nancy fitzmauriceSo, a legal first happened in Britain over the summer, the news of which is just coming out now, and it should have all of us concerned. Nancy Fitzmaurice, a 12-year-old disabled girl, was killed in a London hospital in August, and it was all legal. Her parents fought in court for the right to terminate her life, and the judge granted it.

This is the first time a British court has “allowed a child breathing on her own, not on life support and not diagnosed with any terminal illness, to be killed by the medical system.” (ASAN Position Statement).

William Peace over at Bad Cripple has been blogging for a long time about the danger of something like this happening, as the struggle to make assisted suicide legal in Canada and the US has intensified. And I’ve come to agree with him. I do support the idea that people should be able to dictate the terms of their own death, but the legislation that would permit that needs very specific and stringent safeguards to protect disabled people from having other people dictate those terms.

Especially children. Not that we’ll ever know ever know how Nancy Fitzmaurice felt about her situation one way of the other.

I realize that opponents will argue that we couldn’t have known anyway. Nancy Fitzmaurice couldn’t speak, or walk, eat, or drink, for that matter; she was born with hydrocephalus, meningitis and septicemia  (Read more here). But that’s the point, really. Nobody truly knew how she felt about dying, or whether she’d have tried to stop the process of death by dehydration at any point if she could have communicated that she wanted to. Everyone assumed that she’d rather die than live, and made killing her legal based on that assumption, and the ASAN Position Statement points out that media coverage hasn’t included the voices of those with disabilities similar to Nancy Fitzmaurice’s, to give a counterpoint to the narrative that she could never have any quality of life.

That’s dangerous to me, and deeply ableist. No responsible judge would rule that assisted suicide is appropriate for a non-disabled child, even one in extreme pain, who didn’t have a terminal disease. Even if a 12 year-old who was terminally ill made the request, I would like to think that doctors (and judges) would recognize that:

1) At 12 years old, most children aren’t developmentally capable of appreciating all the consequences of that request and

2) Palliative care should be the alternative at that point, not assisted suicide.

If anyone knows of a situation where a non-disabled, terminally ill minor asked for the right to physician-assisted suicide (or the family asked on the minor’s behalf) and received it, by all means let me know. Let’s tackle whether this would actually happen before we tackle whether a non-disabled minor, non-terminal, but in extreme pain, would receive the right to a physician-assisted suicide.

Actually, no need to tackle it. I guarantee that it wouldn’t happen.

Nancy Fitzmaurice was not terminally ill, and assisted suicide cannot replace pain management in disabled people because some non-disabled people think, “I could never tolerate such low quality of life, therefore this person must not be able to either.”

This is all about assumptions and what happens when you throw legal clout behind them.

Nancy Fitzmaurice and Assumptions

When I woke up after brain surgery, I was still intubated. I wasn’t expecting this, and I initially wasn’t expecting the tube to stay in for long. However, the doctors were keeping it in for a reason: They thought that there might need to be more surgery. No one presumed in that (non-emergency) situation, however, that it was okay to go ahead with it without:

1) Ensuring that I knew what was going on

2) Getting my consent

We figured out how communicate through me blinking my eyes, and I let them know that I understood the potential need for more surgery and consented to it.

If someone *ever* makes assumptions about what I must want for my healthcare, based on the fact that I’m disabled, they will rue the day, and I’m not worried about a doctor trying to talk my family into anything if I can’t speak for myself – my father and sister get it.

I just wish that every disabled person was so lucky, because Nancy Fitzmaurice’s parents would like to see what they’ve done made legal without having to go court. They’d actually like doctors to be able to make these decisions, to spare the parents. (Read more here)

I know that there are people out there who would accuse me of having no empathy for the parents. I actually do. I have children in my life that I love to pieces, including a 3-year-old niece. If I had to watch her in extreme pain, day after day after day, not being able to do anything about it..well, here’s what I wrote about Robert and Tracey Latimer, in my post about Kelli Stapleton:

“Even at that age (15) I could appreciate how difficult it must be to watch your kid in pain and not be able to do anything about it…not even give her pain medication, because it didn’t work.  And to know that her body was just going to keep breaking down, requiring surgery after surgery, until keeping her together was going to be more painful than letting her fall apart. It had to be hell. How long could you really keep a father in prison who only wanted to spare his daughter more pain?”

But Robert Latimer (and Kelli Stapleton) went to prison. Nancy Fitzmaurice’s parents were legally permitted to do what Robert Latimer did to his daughter.

In order to understand why the legal assisted suicide of Nancy Fitzmaurice is so upsetting for disabled people, their loved ones, and advocates, I think that people need to understand that even though these kinds of decisions haven’t been legally made until August, they get made already. Babies with Down Syndrome are sometimes denied life-saving surgery because of concerns over their potential to have a good quality of life. A man with Down Syndrome (in the UK, no less) was issued a DNR during hospitalization for pneumonia that neither he nor his family knew about. I’ve blogged about two disabled people in the US, one of them a 3-year-old, where disability and was cited as a factor for why they were denied organ transplants (Amelia Rivera, the 3-year-old, did receive one eventually, but only after a battle with the Children’s Hospital of Philadelphia). The ASAN position statement talks about the University of Wisconsin Hospital’s “practice of counseling parents to withhold care from children with disabilities for treatable but life-threatening medical conditions”, including a young man with treatable pneumonia, who died after his feeding tube was removed – because people decided that he had no quality of life.

These are arbitrary, subjective, ableist decisions based on assumptions about what defines quality of life (and who does and doesn’t possess it/might ever posses it), with deadly results.  And now the power for others to make these life-and-death decisions for disabled people is supported by a legal precedent. The judge has opened an enormous can of worms.

And it’s not able-bodied people that are going to die because of it. It’s us. That’s why this is scary, and people need to understand that.

Nancy Fitzmaurice: The Bottom Line

I hate as much as anyone else that Nancy Fitzmaurice was in such pain, and that her parents had to watch it. But my heart also goes out to the 12-year-girl who loved listening to Michael Buble and who laughed when her mother slurped her tea.

This quote from Nancy Fitzmaurice’s mother really struck me: “I wanted beautiful memories of Nancy, not soul-crushing ones.” I’ve said before about stories like this that the children pay for what the parents want. I’ve got no doubt that Nancy’s parents loved her. But if I was to make an assumption about her, it would be that she wouldn’t want to be remembered as the little girl whose death gave hope to parents who think that it should be legal to kill a disabled child, even if their intentions were simply to end their loved one’s pain.

If we’re going to make assumptions about Nancy Fitzmaurice, I wish that the court had gone with that one.

 

 

 

 

 

 

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Cheryl Green is Making a New Film!

cheryl greenI’m so glad that Cheryl Green and I became friends this year.

I’d known her name for a while, but I felt moved to write to her personally after I read her essay about how  the brain injury community doesn’t seem interested in crip culture, in the “Criptiques” anthology. I wanted to wave my hand around and say “I am! I’m interested and I have a brain injury!”So I emailed her.

(My brain injury didn’t come from the trauma that we normally associate with brain injury, but there *was* someone rooting around in my head for fourteen hours, and my brain did react by bleeding into some places where blood really doesn’t belong, so yeah…)

I thought that she’d get what I was saying. And she did. We’ve had some great conversations – she really *gets* this stuff. She not only makes me feel like I’m on the right track with what I’m writing, but also gets me to see things in ways that I hadn’t even considered. When she interviewed me for her podcast, I felt like I was talking to an old friend.

I wrote to process becoming disabled, and later to start advocating for myself and other disabled people. Cheryl writes as well, but she also makes films. She’s got a new film in the works right now called “Who Am I To Stop It”.  I’m going to let her tell you about it in her own words!

Oh, by the way…on November 14, I’m going to be a guest host on another podcast with another disability advocate for whom I have a great deal of respect. I’ll be a Guest Host on Disability.TV with Andrew Pulrang, and we’ll be discussing disability in “The Big Bang Theory” (one of my favourite shows!) Visit Andrew’s blog to get details on his podcast and the other television shows that he’ll be discussing.

Now…

Cheryl Green Talks About “Who Am I To Stop It”

My story has a lot in common with Sarah’s. I grew up non-disabled. Years ago, I got involved in a disability storytelling project through VSA Texas. Although I was an Intern and Assistant, I became genuine friends with several people in the group. It was then that I realized the extent of segregation I’ve always seen in my community but never stopped to recognize.

How was it that I, in my late 20s then, had never had more than one or two friends with disabilities?

I had grown up with the idea that people in Special Education are “those people,” and the rest of us are regular. I had bought it hook, line, and sinker and done nothing to counter it. I didn’t see disability as a cultural group, an identity, or set of life experiences to be valued.

When the storytellers at VSA Texas took the stage and shared their stories, I had the pleasure of realizing that the sense of divide I finally could name was manufactured, and I wasn’t interested in silently condoning that divide anymore.

I stayed involved in disability art and moved from Assistant backstage to performer in mixed abilities settings. Along with ongoing friendships, I decided to go into a disability service career. When I made the decision, I still did not recognize the depth of stigma and devaluation of culture that happened in the service field. Although I now had several good friends who were disabled, I had not fully learned the depth of discrimination and oppression they faced constantly. Then, the learning came to me.

In 2010, years of accumulating mild traumatic brain injuries had finally caught up to me. I had always bounced back from them. Eventually. Changed, but good enough. Not anymore. The 2010 incident was worse than any I’d experienced in the prior 25 years of being a clumsy athlete. Life, career, even standing up straight all went on hold. I was thrust into a surreal world of fouled up cognitive and sensory processing that was nearly impossible to explain to someone who hadn’t been there. I quickly began to unfold the many layers of disability experience that include impairment and discrimination.

So I made a film that showed people how confusing my life had become. Then, I made another. Though still changed, I began to feel like myself. Or rather, I felt like I had a decent self. I asked myself whether other people who experienced disability from traumatic brain injuries (of any severity) might also turn to art to feel like they have a grounded sense of self. Turns out, there are a lot of people who do. A lot.

In September, 2014, I completed a feature-length documentary on three artists with brain injuries in the U.S. Pacific Northwest called “Who Am I To Stop It.” We are running a Kickstarter campaign online through October 31st to raise the funds for editing, color correction, sound sweetening, and developing disability access through Captions and Audio Description.

This film takes a very unique approach to brain injury documentary in that there are no stories of how people got their injuries, no medical professionals describing how the brain works, and no extended interviews. We took our film inspiration from the highly artistic, compassionate documentary “Marwencol,” with a primary difference being that one of the directors (me) has experienced disability from brain injury.

Please visit our Kickstarter campaign to see some clips from “Who Am I To Stop It.” Kickstarter is all-or-nothing funding. So we have to meet, or exceed, our goal to keep any of the money already pledged! I give my humble thanks for folks visiting the Kickstarter, donating if you are able to, and sharing the link with your communities.

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My Brain AVM: Taking My Meds

11330123_sOctober is Talk About Your Medications Month, and I’ve been thinking about medications…and being one-handed…and a bunch of stuff…

I took an anti-depressant on and-off through my pre-stroke life, but nothing else consistently or long-term. Now I feel like I keep a pharmacy in the house – I take two anti-seizure medications, morning and night, an anti-depressant at night, and Ritalin in the morning (plus vitamins, etc.)  Sometimes my pharmacy remembers to put my meds in bottles that I can open easily, but more often they’re in bottles with child-proof tops.

I tried to find a YouTube video of some actually opening a child-proof pill bottle with one hand. I could only find one, and the person in it actually looks like they do it differently than I do. I grasp the bottle so it’s firmly in my hand, but so that my fingers are at the top to twist it, use my thumb and fingers the push the cap (and the bottle) down hard on a surface (I usually use my leg, but you could use a table) and then, still pushing down, turn the cap to open the bottle.

It’s easier to show you this, of course. The next time I have a visitor, I’ll get them to film me doing it, because after 14 years of doing this, it’s difficult to even explain how to do it.

Long Live the Blister Pack!

There are (arguably) easier ways to handle this, of course. You’ve likely seen Blister Packs, the cards with the ampules into which medicine is already poured, ready for you to punch out and take at the appropriate time. These are actually great, because they can allow people who otherwise might have trouble pouring their own meds to take them independently. An intellectually disabled person who might have had to live in group home or have had a staff person come in to a place where they otherwise live independently to administer medications each day can know by pictures on the card (like a sun, a moon, or a bed) which ampule to punch out when, and have that control.

Why don’t I use a Blister Pack? It’s never been recommended, and I’ve never felt the burning desire to ask, I guess. But I should remember to ask for meds in non-child-proof containers, because sometimes I get lazy and don’t put them on properly, and I have a cat that likes to knock pill bottles off counters when she wants attention. Neither of my cats have any interest in the contents of said pill bottles, luckily.

The other advantage of a Blister Pack is that you just have to look at to it know whether or not you’ve taken your meds. That sounds funny, because you’d think that you’d know…but these things get to be automatic, and when you live on your own and there’s no one around to confirm whether you did or not when you can’t remember because you’ve been on auto-pilot, it’s nice to know.

Random Stuff

Sometimes doctors ask whether my meds make me sleepy, because the anti-seizure meds tend to do that, and the dose for one of them is quite high. I can’t answer that anymore. I’ve always been sleepy, and I’ve forgotten whether it was different before the pills. Some days it feels like the past fourteen years have been a lifetime, and that I’ve forgotten what it was like before.

When I first started working, sometimes I’d get doing something and forget to take my morning meds (which is okay for me to do every now and then, but definitely not a good habit to get into!) Now I set an alarm on my cell phone to remind me when I need to take them, because I’m kind of disorganized!

What are some tricks that you use to manage your medications? What about medication management is challenging for you?

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Kelli Stapleton, Issy Stapleton, and Two Discussions

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I read an awesome blog last week about Kelli Stapleton.

For those that don’t know, Kelli Stapleton was just sentenced 10 – 22 years in prison on October 8 for attempting to murder her daughter, Issy, then 14, who is autistic. Kelly took Issy to an isolated area, drugged her, shut herself up in a van with Issy and two lit charcoal grills, told her daughter that she loved her, and quietly waited for the both of them to fall asleep together. Luckily, someone discovered them and took them to a hospital before it was too late. Issy was in a coma for three weeks and has suffered some brain damage. Kelly pleaded guilty at trial to first degree child abuse, and advocates feared that she’d receive a more lenient sentence than she would for attempted murder on a non-disabled child. However, her sentence is commensurate with one for that crime.

I’ve tried to write this blog post many times already and can’t seem to get it right, so I’m going to try to make this as simple as possible.

There’s a long, long list of disabled people who were murdered by their parents. The list to which I just linked begins with Canadian Tracy Latimer, who was 12 years when she was murdered by her father, Robert Latimer. I was fifteen, just three years older than Tracy, and just starting volunteer work with disabled people when Tracy Latimer’s death hit the news. I was just starting to develop a different lens through which to see her death than the 73%  of Canadians in 1999 who thought that his action was taken out of compassion, and the 41% who believed in mercy killing (Ipsos 1999 ). I always thought that he should go to prison.

I vacillated as to how long as the case developed. Even at that age I could appreciate how difficult it must be to watch your kid in pain and not be able to do anything about it…not even give her pain medication, because it didn’t work.  And to know that her body was just going to keep breaking down, requiring surgery after surgery, until  keeping her together was going to be more painful than letting her fall apart. It had to be hell. How long could you really keep a father in prison who only wanted to spare his daughter more pain?

I don’t know when I turned the corner on it, but now I say that he should have served the same amount of time that he would have if he’d murdered a non-disabled child, as Autistic Self-Advocacy Network’s Ari Ne’eman argued at Kelli Stapleton’s sentencing hearing. A disabled child’s life is a life, and there’s already a perception out there that disabled people are disposable that doesn’t need further encouragement.

Besides, I think Robert Latimer’s desire not to see his daughter in pain was also at least in part about him no longer having to watch his daughter in pain…and it’s not fair that she ultimately paid the price for that.

Because of a technicality with his first trial, it was 8 years before Latimer even went to prison for second-degree murder. He was out in 9 years.

But back to Issy and Kelli Stapleton.

Issy and Kelli Stapleton – Two Important Discussions

As I said, most Canadians supported Robert Latimer’s actions, and Kelli Stapleton definitely has her supporters too – particularly on social media, and on the blog that she wrote. This isn’t unusual when a parent kills a disabled child, especially since the media tends to paint the parent in a sympathetic light and to play up the difficulties involved in parenting the disabled child. The Dr. Phil Show in particular drew a great deal of criticism for this after interviewing Kelli Stapleton from prison.

I watched Dr. Phil’s two-part show about Kelli Stapleton’s actions – twice – and I think that part of the problem was that there two important discussions that arise from stories like this, and one really got almost totally ignored – by the Dr. Phil Show and in general by the media.

There’s a complicated discussion about lack or scarcity or resources that meet the needs unique needs of disabled children and their families. Kelli Stapleton said that she couldn’t get any help. I’ve heard this before in stories where a parent murders a child. I also read her blog – it does seem like she was receiving some supports.

Were they not meeting Issy’s needs? The family’s needs? Would something have worked more effectively? What?

We’re discovering in Canada that slotting people into inflexible supports and saying “This is how it is – adapt to us” doesn’t produce the best outcomes. It’s led to provinces adopting individualized funding, where people receive funding to purchase their own supports from a variety of providers – the improved flexibility lets families create a support system that meets their needs more effectively and produces better outcomes for everyone involved. Because a great support is useless if it’s only offered at a time that the family is unable to access it, or if a family must accept a whole package of services that won’t work for them just to access one that might. Everyone has different needs.

Maybe this is what was going on with the Stapletons, maybe not, but it’s worth thinking about in general. Perhaps, as some have suggested, Kelli Stapleton is just a person who wasn’t interested in effectively using what was being offered to her. I don’t know. But I’m hoping that the people offering supports to the Stapletons at the time of the attempted murder thoroughly went over what everyone was doing with the family at the time, because a few things that came up during the Dr. Phil interview that made me think, “That needs to be looked into. Someone dropped the ball there.”

And then there’s a second discussion, the one that the media in general hasn’t been having about Issy and Kelli Stapleton. doesn’t have. It’s arguably the more vital of the two, and the fact that the media doesn’t have it is a huge problem.

Few in the mainstream media say that it’s simply wrong to murder disabled people.

Lack of services is not an excuse.

Difficult behaviour is not an excuse.

Sparing a person pain is not an excuse.

Parents convincing themselves that the disabled child would be better off in Heaven is not an excuse.

There is no excuse.

Plenty of people in the disability community have said this since Kelli Stapleton tried to murder Issy, especially since the Dr. Phil interview. Dr. Phil tried to say it, I think. He was clear with Kelli Stapleton that he found her actions unacceptable, but the message was lost. It didn’t make it through to the people who are used to the very direct, “What were you thinking??” approach that he takes with other parents of children in crisis.  He went extremely easy on her. There were many questions that I wanted answered that weren’t asked, and and the social media response showed that people came away with a sympathetic view of her.

The media needs to tell people that there’s no excuse for that, either. It’s victim blaming, and it doesn’t happen when parents murder non-disabled children. This should not be a society where, when a child is murdered, the murderer gets our sympathy.

Justice for Issy Stapleton

For justice’s sake, let’s take it down to the bottom line and leave autism out of it: Kelli Stapleton tried to murder her daughter, Issy, and got the usual sentence of 10 – 22 years in prison. That’s the justice that Issy Stapleton deserves, and that’s what all of us who have been standing behind her were hoping for.

I think that this is the closest that I’m going to get to what I want to say.  The awesome blog that I mentioned in the first line was written by Beth Ryan at Love Explosions.

Here’s some more great writing about Kelli Stapleton and her daughter Issy Stapleton:

I Am Not Kelli Stapleton Flashblog

ASAN, Disability Community Statement on the Sentencing of Kelli Stapleton

Changing Conversations: When Parents Murder Disabled Children

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Accessibility Advocate in My Own Town

Accessibility Advocate in My Own Town

imagesI find it difficult to do accessibility advocacy in my own town.

I do it. Every now and then, I’ll approach a store owner over an accessibility issue. Depending on how they respond (not necessarily on what they do about the request, but that definitely helps), and whether the service is available from another store in the community, I might decide to shop more there…or less…or not at all…it depends on whether I felt brushed off or taken seriously. I once cornered a municipal politician in the post office and expressed a concern about accessibility in the town.

My town is much more accessible than it was than when I moved back here after my stroke, but there are still quite a few issues that need addressing, and the Ontario Government is going to require that they be addressed. There’s a plan in place that requires public places, businesses and non-profit buildings to meet certain standards of accessibility by certain dates. By 2025, most buildings and public spaces will be required to be fully accessible. Municipalities and the businesses in them need to be planning for this. A new standard is coming into effect on January 1, 2015.

I didn’t talk about this the other night at my municipality’s all-candidates meeting, but I did ask what the candidates for Reeve and Deputy Reeve intend to do to make my community more welcoming to disabled people.

Election Season

It is that time again. We’re coming up to a Municipal Election in Ontario. I really wanted to be at all of the All-Candidates meeting for my municipality last night, but I had to work. However, I’m working not far from where the meeting was being held, and I got in just under the wire to ask my question.

I’m not new to public speaking or advocacy, but this one was difficult, and I’m not really sure why. It took a lot out of me, to stand up in a room packed with my neighbours, my former teachers, agency people that I’d not talked to for years, people that my family had gone to church with, people that had known me for most of life, and say, “I’m disabled and I need you to take me seriously.” I remember, after first encountering people from my community when I was in my wheelchair, I vowed to be seen in my wheelchair in town as little as possible. I’d seen the pity in their eyes and I’d hated it.

I didn’t want their pity the other night, either, but I wasn’t going to run from it this time. As to whether I was taken seriously – I pretty much got the answers that I expected, which is that making the town more accessible is a process and that it costs money and takes time. One candidate was able to identify some specific things that she’d like to see done.  Another said that Council would “have to talk to you” (presumably disabled people) to find out what was needed.

Yes. You will. The answers that the Council candidates gave to a gentleman in line just ahead of me prove that.

If You Haven’t Been There, You Probably Haven’t Thought About It

He was concerned that in order to walk to our community hospital and medical centre, people have to walk along the highway, which is unsafe. It is. I’ve made this walk myself. He wanted to ask the people running for Council what they were going to do about it, and very few could answer the question.

They’d never walked to the medical centre or hospital from town, so they weren’t aware it was an issue.

I don’t know if any of the people running  last night read this blog, but this is what accessibility issues are like. Unless you’ve had to deal with the issue yourself (whether because you’re disabled or someone in your life is), you’re not likely to be aware of what the issues are. For example, a ramp to get into a public building is wonderful, but having to get across grass to get to it is an accessibility issue. But it’s difficult to know that unless you’ve had to push yourself around in a manual wheelchair.

Or unless you ask someone who’s had to do it.

So if you want to know how to best make the town accessible for disabled people, ask us what we need. We’re the experts on our own experience, and we’re not going to steer you wrong – after all, we just want to be a part of the community too.

Let’s finish with a story about accessibility, for the candidates all over Ontario who are being asked about it. Because I think there’s a tendency (and it’s not wrong, of course) to have the mind jump automatically to costly ramps and modifications to buildings when we hear the word “accessibility”. But, as so many who read this blog know, accessibility so much bigger – and often so much simpler.

Accessibility and Customer Service

There are a couple of grocery stores in my town, but I like one, the Foodland, in particular. It’s within walking distance, first of all. But for other reasons, too.

I manage food shopping pretty well, but something invariably comes up that’s difficult to do when you’ve got one hand to work with and your balance is a little off. Something is too heavy to get off the shelf and into the cart. Something is too high on the shelf. The damn produce bag won’t slide open – I could barely get those bags open when I had two hands to work with!

One day, I was walking around with a cart (instead of trying to cram everything into a basket and then carry my cane under my arm, because why do anything the easy way?), and a young employee stopped beside me. He looked like he was in high school. He looked at my cane, then at me, and said, very pleasantly, “Ma’am, do you need any help?”

On that particular day, I didn’t. But I’ve had days when getting around has felt so overwhelming  that a simple offer like that probably would have almost reduced me to tears of gratitude. Even on my bad days, I’m not very good at asking for help, even though the staff at Foodland are always very friendly and I know that I could ask any one of them for help if I needed it.

The easiest way to make your store accessible is to keep your staff accessible. At Chapters I have to fight off the floor staff, but at least I know that support is never far away. Stores that have cashiers ask “Did you find everything that you need?” at check-out give people an opportunity to get assistance without even disclosing an invisible disability, if they prefer, and non-disabled people will talk about the good customer service.

Accessible spaces benefit everyone. So do customer service practices that increase accessibility, and they don’t cost a thing.

Good luck to all the candidates on October 27th.

 

 

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And…Kanye West Responds.

This is just my opinion…but based on this speech that Kanye West gave at his show on Monday night, I don’t think he gets it.

I could be wrong.

Thanks to The Daily Beast for the transcript of West’s rant:

“What I want you to do is I want you to run the video everyone’s talkin’ about where I so-called screamed at somebody and everything. I want you to run that, right, since this is such big media-press-news and everything that obviously they trying to demonize me for. It’s like, ‘Welcome to today’s news, ladies and gentlemen.’ We’ve got Americans getting killed on TV, kids getting killed every weekend in Chicago, unarmed people getting killed by police officers…

…It makes you just want to reflect on what are the things that are a little bit more sensationalized than others. I want to take this platform. If I didn’t have this last concert, maybe I would’ve tweeted something or put out a statement with a publicist, but I can talk directly to you—my fans. Because they’ve got this thing where they want the masses—people who’ve never heard my albms—to somehow read a headline that reads negative, and think that I’m a bad person or somethin’. I’m not judging, I’m just going to tell you who I am. I’m a married, Christian man. So, if you take someone that can go from being a rock star across the globe and everything and make the decision to pick one woman and raise a family, anyone here that’s married or that’s in a relationship knows that there’s enough things workin’ against you. I’m not going to make one of them Ben Affleck statements and shit.

But what I’m sayin’ is, you’ve got like 12 years that we put in positive music. How many people ever heard one of my songs on their way to work—they heard it, and it made them feel better? And on those songs that made them feel better, don’t I say offensive shit here and there, like, so wait a second, that’s my brand! I curse and say really offensive… wait a second. That’s why when I did ‘Runaway’ earlier, I said, ‘I sent ya a picture of my dick…’ what did ya think when y’all heard that? That’s not G-rated! This is rap fuckin’ music! This is real expression. This is real artistry. You know, an artist’s career doesn’t happen in one cycle of news—an artist’s career happens in a lifetime. And if you’re a true artist, you’re willing to die for what you believe in.

And I don’t know if you feel like this, or give this feeling after the 10, 11, 12 years, but does it seem like in any way I might be slightly a true artist? So, people on the Today show, I’m not sure I keep up with the news, but if Michael Strahan is still at the Today show—no, Good Morning America, Matt Lauer, the girls on The View—Whoopi Goldberg, Robin Roberts, if y’all run this, take a step back and look at this: I’m a married Christian man with a family. At my concerts, I make sure everybody has as good a time as possible. So all this demonizing me, it ain’t goin’ to work after a while. Pick a new target. Pick a new target. Because I’m not one of these dumbass artists that you’re used to. You come at me, I’m going to take my platform and break this shit down for real, intelligent people every night. And then, we’ll get back to the music.”

 

I might come back to this, I might not. Right now it’s just making my head hurt.

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Kanye West’s Treatment of Disabled People Proves that He Really is a Jack-Ass

“He’s a jack-ass.”

President Obama is speaking, in this clip from off-the-record portion of a 2009 CNBC interview that was later leaked, about singer Kanye West. It was right after West had jumped onstage at the 2009 Music Video Awards and interrupted Taylor Swift’s acceptance speech for Best Female Video category, insisting that Beyonce’s video in that category was “one of the best of all time.”

More recently, Obama publicly called Kanye West a jack-ass in an article in The Atlantic…a talented jack-ass, but a jack-ass.

I know pretty much nothing about Kanye West (expect that he married one of the Kardashians, because it was difficult to miss that story this summer), but the Taylor Swift incident pretty much had me and just about everyone I know convinced that he’s just astoundingly arrogant and really not a person in whom I’m all that interested. But even I couldn’t miss the news of his apparent need to get the disability community’s attention last week.

You got our attention, Kanye West. Congratulations on a job well done, jack-ass.

Setting the Scene: September 10, 2014, Melbourne, Australia

You’ve paid good money for a ticket to a Kanye West concert on his “Yeezus” tour. (Your guess is as good as mine.) You’re wearing a cast.

When the song “Good Life” comes on, West stops the music and claims that he can’t go on until everyone in the audience is standing…unless you’re handicapped, and willing to pull out your “handicapped pass” right now.  He walks around the stage asking seated people why they’re not standing.

Since you’re wearing a cast, he tells you that it’s okay for you to stay seated.

But it gets worse.

Setting the Scene: September 12, 2014, Syndey, Australia

It’s September 12 in Sydney, Australia. You’ve paid good money for a ticket to a Kanye West concert on his “Yeezus” tour. You’re using a wheelchair.

Again, when the song “The Good Life” comes on, the music stops, and Kanye West demands that everyone stand…unless you “got a handicap pass” and “get special parking and s**t”. You are one of the two that he zones in on as not standing up – the other is man that uses a prosthetic, that he waves in the air as proof of not being able to stand. Despite audience members around you yelling that you’re in a wheelchair and making motions like they are in a wheelchair, and despite Kanye West saying that if you’re in a wheelchair, it’s okay if you don’t stand up, he sends a bodyguard to check to make sure that you are indeed in a wheelchair.

Onstage, West says, “This is the longest I’ve had to wait to do this song. This is unbelievable.”

Once he’s sure that the people who aren’t standing up are in wheelchairs, he goes on with the song.

Washington Post Article on the Sydney Incident

Let’s Talk About Kanye West and How He Treats His Disabled Fans

Now, just to start with…I really resent the idea of being told how I have to enjoy the music at a concert, just as a matter of principle. The first concert I went to, I was at the start of a stomach virus. While I managed not to throw up, I was fairly nauseous through the whole thing, and I don’t remember standing up a whole lot, and I don’t know how pleasant it would have been for everyone if someone had made me.

I don’t know how much a ticket to a Kanye West concert goes for, but I’d imagine it’s probably more money than I spend on a couple of weeks worth of groceries right now, and I’ll be damned if I, as a member of the audience whose financial support even allows the performer to tour, am going to be told by said performer, “If you don’t do it my way, I’m not going to play.”

Whatever. It almost…almost…makes me want to buy a ticket to one of his concerts so that I can remain sitting down when he insists that I have to stand up, just because I have the right to do so. I’m really rubbed the wrong way by this.

However, there’s a larger issue here, and Scott Jordan Harris sums it up quite nicely:

“Kanye West gave so little thought to disabled people that he was surprised to find two among an audience of thousands. When he did, he felt it was his right as an able-bodied person to determine whether those people met his personal standard for disability. This attitude comes from the belief that public spaces belong to the able-bodied and that disabled people can only ever trespass in them.”

What did these disabled people get for daring to buy a ticket to a Kanye West concert?

  • They were shamed because they couldn’t stand
  • They were centred out in front of an entire concert venue audience on the basis of their disabilities
  • They had to “prove” that they were disabled to Kanye West before he’d continue the performance
  • Because *he* needed the proof, they were made to feel like they were holding up the concert

Not only would I have left, I would have asked for my money back.

It shouldn’t be a shock to anyone that Kanye West hasn’t given any thought to what his behaviour says about how he views disabled people and their place in the world. The man obviously needs a separate tour bus for his ego.

What still should at least give us pause is that society doesn’t think all that differently than Kanye West does:

“He can walk fine…why has he got a sticker?” I’ve heard people say, watching someone walk from their car parked in the disabled parking spot to a store door.

“That person’s not disabled enough to get benefits. Scrounger.” I don’t like to think about how many people in England have heard this said over the last few years, possibly about them when they were in earshot.

“Why is he using a scooter? I’ve seen him walk.” I’ve heard this a lot about disabled people in my community who end up using scooters instead of manual or electric wheelchairs.

Many non-disabled people (and sometimes even among other disabled people) seem to think that they have the right to declare, based on what they think disability should look like, whether it’s “okay” for  a person to do/not do certain things, act/not act in certain ways, have/not have certain supports…it doesn’t always come with the arrogance of Kanye West declaring it’s “okay” that you remain seated once you’ve proven that you can’t stand up from a wheelchair, but even the more subtle manifestations are still a reminder that there’s a perception out there that if disabled people expect to participate in society, we should expect to have to prove that we’re “disabled enough” to the general public every now and then.

No.

There are very few people to whom I have to prove that I’m disabled. They are service providers that need proof of disability so that I can start/keep receiving some sort of service. I’m not crazy about this, but it’s part of life, it’s fairly infrequent, and I deal with it.

I do not have to prove that I’m disabled to a person on the street, another disabled person, or anyone else that I don’t want to. That includes Kanye West and any other jack-ass pop-singer whose ego is so fragile that he can’t bear not to have every single person in the audience up and dancing during a performance.

I’m nearly 37 and I’m too old for this crap – from Kanye West and anyone else. But let’s just say I have further incentive not to buy any of any Kanye West’s albums.

 

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Thoughts on Inclusion and Intellectually Disabled People

Thoughts on Inclusion and

Intellectually Disabled People

Shiny green push button with shiny grey border, "inclusion" in uppercase black letters across button. Keyword: intellectual disabilities.
Recently, in an internet  discussion group to which I belong, we were debating all things inclusion for intellectually disabled people.

Inclusion vs. Segregation for Intellectually Disabled People

It was an interesting experience for me, because I’ve never really heard people defend the argue the idea that moving toward community-based housing and employment and out of institutions, group homes and sheltered workshops potentially violates the ideals of person-centred planning, and that institutional residential and employment arrangements aren’t segregated…that they are, in fact, a better option for intellectually disabled people than more community-based alternatives.

I was one of the ones arguing in favour of more inclusive practices when supporting intellectually disabled people which probably doesn’t shock anyone. Out of the three of us “inclusion types” that were talking the most, though, I was definitely the moderate one. Maybe it’s because I’ve worked with a lot of parents and seen how scared they are for their intellectually disabled childrens’ safety once they leave the home, that the constant supervision of a group home or even a more institution-like setting (Ontario doesn’t have institutions anymore, but I understand that other areas still do) becomes attractive. I can see the other side, while still firmly coming down on the idea that it’s more desirable that all disabled people , including intellectually disabled people, be as much a part as the community as possible, and that institutions, group homes, and sheltered workshops tend to work against that.

The Argument Against Community-Based Placements for Intellectually Disabled People

But, said the people arguing the other side, what if people are more comfortable in those environments and they don’t want to leave? You are taking away their choice. You are telling them, “Inclusion is the right way, and you’d better get on board, even if it means leaving your home/workplace and your friends and all the things that make you feel comfortable.” It wasn’t about segregation, they argued. It was about really listening to intellectually disabled people and what they wanted out of life.

And wow, did it ever take off from there.

We got into questions of whether people can actually make an informed choice if they haven’t experienced the alternatives, whether social systems stream intellectually disabled people into segregated settings and when that starts if people do believe that it happens (I do believe it happens, practically from the time that a child is officially identified in school as having an intellectual disability), whether disabled people having other disabled friends is “inclusive”, and medical intervention versus “warehousing” when a person does have to spend time in an institution. We talked about caregiver rights. It got heated, sometimes a little nasty. People were very passionate about their positions.

The other, less moderate gentleman and I tried to explain our positions on all this several times, but I didn’t feel like I was being understood…I’d venture a guess that the people on the other side of the debate were feeling the same way, from the tone of the discussion, but it seemed to me that we were all ultimately working toward the same goals. I was puzzled as to where we were going sideways.

What I Do Know – How I Support Intellectually Disabled People in My Work

I’m not interested in fixing a situation that isn’t broken to begin with, including moving someone out of an institution, group home, or sheltered workshop if they haven’t indicated that they’d like to move and they’d like my help to do so.  There are some situations where, unfortunately, people have to move out of places because of issues related to safety and violations of rights, like when people were moved into community settings when institutions started to close in Ontario, or when medical issues arise that require specialized interventions that can only be delivered in a hospital or, say, inpatient mental health services setting, or when families are in crisis to the point where they can’t care for an intellectually disabled family member anymore and that individual must by necessity take the first placement that opens and wait for a more suitable one.  These are tough situations, involving the health and well-being of the individual, and sometimes that has to take priority over whether a placement is community-based.

However, how can a truly person answer, “Do you want to continue living in a group home or live (or work toward living) in your own place?” or “Do you want to stay at the workshop or try to get a job somewhere else?” if they’ve never experienced anything but living in a group home or working in a sheltered workshop (or at least never had it explained to them that there are different ways that people live and work than what they’ve experienced and that they have to right, as citizens, to try these things if they want?) Maybe it doesn’t happen tomorrow, because maybe there are skills that need development and supports that need to be put in place…maybe it takes a long time to work up to being ready to live independently…and maybe it even doesn’t work the first time out because it’s too overwhelming…

But intellectually disabled people should have the right to take risks, and it’s not the worst thing in the world for them to experience disappointment. And you never know – what you think is going to turn out terribly (and I’ve been there in my work, when an intellectually disabled person that I support has announced intentions to do something and I’ve just wilted inside, thinking, “Wow, there’s no way this is going to work”) may actually turn out wonderfully for all involved. I’ve seen this happen too.

One interesting thing I noticed about this discussion was that sometimes it felt like each side was criticizing the other for the same thing:

  • There are too many rules and the individual doesn’t get to make them
  • People fall through the cracks and that leads to bad service and potential abuse

I took two classes on person-centred planning for my Developmental Services Worker Diploma, and have been exposed to it as a philosophy of support for as long as I’ve been in this field (over half my life). I’ve never taken it to mean that it’s about making choices for people, or even influencing them a certain way. Yes, it’s unfortunate that intellectually disabled people (all disabled people) are at the mercy of whatever current trends are shaping the services that they use, and if that means that means that a person has to leave a group home or sheltered workshop (or move into a group home or institution setting if you’re living in England, or even in Canada – loss of control is a theme for disabled people the world over, it just manifests in different ways sometimes), but when I worked with youth I told them:

“We’ll talk about what your options are, we’ll make a plan, and then we’ll talk to the people who can put the plan in place. If you ever want to change the plan, just say so, and we will. This is your life.”

Part of the process was, “If you don’t like doing something that we’ve set up, tell me, and it doesn’t go any further. It stops there.”

The individual always set the course. Why wouldn’t they? It was their life, not mine.

When families are involved, that kind of process is difficult.  It takes a bit of negotiation sometimes, particularly if the person was under 18 and not considered an adult. In the group discussion, I didn’t get into how my first responsibility was to the individual (with some exceptions dictated by legalities around age). It didn’t seem like a discussion that would be welcome among parents in the group.

I don’t use a specific person-centred planning tool, but I use the methodology, and didn’t understand the objections to it in the discussion.

And if you want to argue that people don’t fall through the cracks and that abuse doesn’t happen in residential settings, then I’ve got a long list of articles that you need to read.

I left the conversation when it was obvious that it was getting personal and not going much further, but not before I posted this:

I don’t know whether it was this thread or another that I wrote about Special Olympics, but I’ll say again that my experience of it is that intellectually disabled people get told, “This is a great chance for you to play sports” when some of them could definitely play sports on a level that would allow them to comfortably compete on a community league…certainly much better than I ever did before I acquired disabilities. I understand the reasons why people like SO, and it’s certainly a valuable program, and even if people can play in community leagues and would rather stick with SO for their own reasons…go for it. But people have the right to know all their options, if they’re interested in playing sports…that they have the right, as all community members do, to try community league play if they want, instead of having people assume that because they’re disabled, they “belong” in SO and that it’s the option they’d choose, so no others need to be talked about… but as far as whether people choose to associate with other disabled people, or non-disabled people, or a mixture of both, or hang out by themselves…not my call to judge their choices or to presume to tell them their choices are wrong. I just let them know what their options are and, if they want/need the help, assist them to set it all up (assuming I ever get work in this field again). Does that make sense?”

I think that there will always be some intellectually disabled people who require a level of care that’s more institutional in nature than inclusion advocates like me would like, because of specialized needs. I also think that there are ways of increasing agency and self-determination within these settings for providers who are really committed to doing so, and that the population who really requires this level of care is smaller than we assume. The thing that really bothered me about the arguments against community based-supports was that they seemed to minimize the fact that intellectually disabled people have rights – not rights that can be ignored or tweaked because of the individual’s disabilities to fit others’ needs, but rights that they have by virtue of being adults in our society.

We need to get back to presuming competence and finding ways to allowing intellectually disabled people to make truly informed life choices, not letting ourselves be afraid of individuals potentially making bad decisions.  We need to be okay with the lives of people we support getting a little (or even a lot) messy as they learn about being a community member and the rights and responsibilities that come along with that.

Ultimately Agreeing, But Still So Different

The thing that we all agreed on this discussion? That disabled people in general and intellectually disabled people in particular should drive the discussion in which services develop and change, and that they should have as much input as possible into that change process. I feel like we all had a lot more in common than anyone would guess at first guess. Just drastically different ideas of what that should look like, which was perhaps the most frustrating thing of all about the whole discussion.

Thoughts?

 

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Writing Process Blog Hop

Writing Process Blog Hop

Young woman with very long, dark blonde hair, dressed in long-sleeved red shirt and jeans, sits cross-legged and looks up thoughtfully, holding pen to her mouth. She has papers in her lap. Keyword: writing

This is my response to a Writing Process Blog Hop that came to me via Andrew Pulrang of Disability Thinking.

Yay blog hops! Good times. Thanks, Andrew!

What Am I Working On?

Obviously, I’m blogging…probably not as much as I should be, but I’m working on it. I’m also trying to get some more freelance work, so I’ve been focusing on that as well.

But I’m also feeling like it’s time for a follow-up for the small book of personal essays that I wrote in 2007, about my experience of having a stroke. It’s out of print, so don’t ask how you can get it, lol. But if the essays aren’t included in this new book (because my first book was that small), I might just make it an ebook so that anyone who might be interested can read it if they’d like.

I feel like it’s time for a follow-up book because, reading my first book, I realize that I’ve learned more than 2007 me could ever have thought possible about disability. I read it now, and I’m kind of shocked at the way that I used to look at things. Despite being around disabled people for over a decade when I’d written it, I really didn’t know much about ableism beyond its very obvious manifestations (and couldn’t tell you that discrimination against disabled people is called “ableism”), or disability pride, or cure versus acceptance…

I think that there are signs in my first book of my activist voice starting to emerge, but it definitely wasn’t talking loudly. It’s time for a book where it’s out there.

So that’s in the works. It’ll probably have some of my blog posts in it.

Also, I’m between day jobs right now, so I’m looking for work. That’s challenging for a number of reasons in my area, and I’m hoping that something will come up soon.

How Does My Work Differ From Others in My Genre?

I think that I’m different because a lot of my blog posts end up being like news stories. They didn’t start out that way – when I was producing a post a day, it was mostly my opinions, and it was easy to put a couple a week, if not one a day. Then I started commenting on news stories and the issues behind them, and I wanted to provide background on the story, and then make sure that background information was from accurate sources with links to it, and then I’d say my opinion – and that cut down on how much I could produce, because those blog posts are long and they take time to do. But I actually like writing long pieces. I loved writing essays in high school and university.

Dave Hingsburger has been blogging once a day for years and never seems to run out of interesting things to talk about. Sometimes I wish my blogging style was more like that.

Why Do I Write What I Do?

I remember being in elementary school and seeing the kids in the segregated special education class out on the playground at recess and wondering why no one wanted to play with them. I got involved in the disability services sector when I was 15, decided at 21 that I wanted to get some official training to make disability work my career, and then had a stroke and became disabled myself. After getting that training and living and working as a disabled person, I decided that I had some things that I wanted to say (that I hadn’t said in my book), about disabled people and society, and discrimination, and accessibility, and…everything that I write about. So I started a blog.

Writing is one of the few things that I’m really good at, so I use it to draw peoples’ attention to these disability-related issues that are important to me.

How Does My Writing Process Work?

I get ideas from Twitter, Facebook, and a Google alert that I’ve set up for “disability”. If there’s a disability story that’s big news in the community and it’s something applicable to my blog (like when the Judge Rotenberg Centre talked to the FDA advisory committee, for example), I’m very likely to blog about it.

Some stories that I blog about may not seem directly applicable to disability, but I may do so anyway because I’m interested in the implications that the story may have for disabled people. That’s why a lot of stories were showing up in the blog for a while about abortion and misinformation about birth control. Disabled women (intellectually disabled women in particular) aren’t having their voices heard in this debate, and are hurt by misinformation about safe sexuality. So I write about those stories. Same with issues like the voting process – we don’t generally hear about how these issues affect disabled people, but they do, in specific ways that need to be explored. So I believe that it’s appropriate to write about developments around these issues in a disability blog.

Many people in the stroke blog community consider me a stroke blogger, but I always wonder if they’re curious about the fact that I rarely post about my stroke, or stroke in general. I’m not sure why this is.

So that’s me and writing. This is a Blog Hop and I’m tagging the following disability bloggers: Elsa S. Henry at Feminist Sonar, Linda Atwell at OutOneEar and Rhiann Johns at My Brain Lesion and Me.

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Transition Planning Resource from AbilityPath – “The Journey to Life After High School: A Road Map for Parents of Children with Special Needs”

The Journey to Life after High School logo. Three silhouetted figures in graduation garb cross a road winding toward the horizon. One is male, one is female, one of indeterminate gender is in a wheelchair. Keyword: The Journey to Life After High SchoolI spent some time last week reading AbilityPath’s “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs”, which is a transition planning resource guide for families. I did transition planning for intellectually disabled students getting close to high school graduation for 5 years.

I knew very little about transition planning going into the job. I’d been involved with the developmental services sector for a decade and done the Developmental Services Worker diploma program, so I wasn’t unqualified. However, I’d had no idea idea how complicated the process of assisting students and their families plan for post-high school life could get. I downloaded a ton of transition planning materials from the Internet and read all of it. I printed the very useful stuff out – it’s still in my files. I got good at my job. I loved that job.

One of the main things that I took away from those five years is that effective transition planning for disabled students is extremely important. The last couple of years in particular before high school graduation bring up fundamental questions for students and families:

  • What will the young person’s day look like without school to go to? What kind of adjustments does it mean for the family?
  • What kind of supports will the young person need? How are they accessed?
  • What kind of supports are lost when school ends, and who can provide them?
  • Most importantly: What the student want for his or her life, and how can that be put in place?

The stronger the plan, the stronger the young person’s foundation for adulthood.

Given how strongly I feel about the importance of transition planning, I was really honoured to be asked to attend a press teleconference to launch “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs”. This book is just what I would have been looking for when I was learning about transition planning, and I think it will be very useful for families.

Here’s what I liked in particular.

It’s Very Person-Centred

The individual should be at the centre of their plan, and the “The Journey to Life After High School” kept coming back to that, constantly emphasizing that the individual should be present at their planning meetings, their IEP meetings, meetings to arrange services, etc. This sounds like it should be a no-brainer, but it’s surprising how often individuals get pushed out the process, even though transition planning should be about his or her desires, hopes, and dreams for adult life. It can become very easy for the team involved in planning to start talking around and about the person. “The Journey to Life After High School” keeps talking about the individual as the most important part of the process.

It’s Thorough Without Being Overwhelming

When I first downloaded “The Journey to Life After High School” and saw that it was 80 pages long, I thought, “Wow, that’s hefty.” But 44 of those pages are contact information for national and state resources, and a thorough reference list. The remaining 36 pages thoroughly cover the spectrum of issues involved in transition planning: school and IEP issues, employment, residential options, medical planning, benefits, power of attorney, support networks, and estate planning. The guide uses case studies, including Miss Montana 2012 Alexis Wineman, the first autistic Miss America contestant.

It’s a lot of information, but it’s well-presented, and doesn’t become overwhelming. The writers have stayed away from jargon and kept the writing accessible. As I said, the section on legislation is about America laws pertaining to disability and education, of which I only have a passing knowledge, and I found the summaries interesting and easy to understand.

It Talks About Community-Based Options as Well as Agency-Based

It’s been my experience that when parents are first exploring options for adult life for their disabled child, they want to know about heavily-supervised day support programs, group home and other agency-based options, most often because they’ve been told that these are the only alternatives. “The Journey to Life After High School” talks about these options, but also thoroughly explores more community-based options for students with all types of disabilities. It gives very practical advice about how to evaluate which housing, employment, and education options may be most appropriate and secure the support that students need to thrive once they’ve chosen a given option, plus case studies.

It Recommends That Transition Planning Start Early

Ideally, I started my work with students when they were 17, assuming that most of them would stay in school until they were 21. For a variety of reasons, I only got the full four years with a small number of them, which was too bad. Effective transition planning takes time.

“The Journey to Life After High School” suggests that some aspects of transition planning begin in middle school. I like this idea. That may seem young, but it really isn’t too young for parents to start having periodic conversations with a young person about dreams for adult life – what kind of work he or she would like to do, where he or she would like to live, hobbies, relationships, etc. By the time the young person reaches 14, when “The Journey to Life After High School” suggests that transition planning begin in earnest, the student and family will have some ideas about the skills required to meet these goals that can be built into the Individualized Education Plan (IEP) and the student’s routine at school.

It’s Low-Pressure

Transition planning is very important, as I said, and it’s very easy for parents of disabled children to take it on as yet one more thing that causes them a great deal of stress. Reading through “The Journey to Life After High School”, I really liked its emphasis on the transition plan as a work-in-progress. Sometimes what the student and the panning team comes up with works nicely, sometimes things need to be changed (often for the simple reason that the individual changes his or her mind about something in the plan). A change in the plan doesn’t mean a failure on anyone’s part.

I also like the acknowledgement that this transition period is difficult for parents as well as students. I think that parents need to hear that. We can all appreciate why leaving the structure and predictability of school is difficult for students and why this transition period is challenging (very challenging, for some), but it’s also difficult for parents who may find themselves suddenly trying to adjust to playing a different role in the life of a young person who may have needed much more attention and care than other children in the family. Letting go can very difficult. I’ve seen this, and I was glad to see it acknowledged, because sometimes parents need supports during this process as well.

People need to go easy on themselves. For most families, this is uncharted territory. I think that using “The Journey to Life After High School” will contribute to making the whole process less of a pressure-cooker than parents anticipate.

“The Journey to Life After High School: Worth Reading for Families, Staff, and Educators

I really wish that all high schools had someone to help disabled students and their families through the transition planning process. Given the resources available right now, there sometimes wasn’t a lot I could do, but at least I could help with the application forms (often confusing), answer questions, and be an advocate and a listening ear.

In the absence of an actual person to go to learn about transition planning, “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs” is a remarkable substitute.

Download a copy of “The Journey to Life after High School: A Road Map for Parents of Children with Special Needs” here.

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