Girl With The Cane

So, apparently the way to see Disney World is to hire a disabled person to pose as a family member, so that you can bypass the rides for the lines. Social anthropologist Dr. Wednesday Martin cracked the story while doing research for her upcoming book, “Primates of Park Avenue”.

“This is how the one percent does Disney,” said a mother who enlisted the services of Dream Tours Florida to provide her with what she called a “tour concierge”. For $130 an hour (or $1040 for an 8-hour day), a woman on a motorized scooter with a “handicapped” sign on it accompanied the woman, her husband and two children through the park during their visit, enabling them to access a special entrance at all the rides where the wait time was significantly shorter.

Disney offers a VIP tour service that’s a bit cheaper, but parents are finding that this “black market” service is apparently worth the cost. The service is accessible only by “insider knowledge”, with the most recent group of “insiders” being New York’s private school set, according to Martin.

Is Dream Tours Wrong for What They’re Doing at Disney World?

I think that they are, bottom line.

I’m not going to pretend that people didn’t suggest to me, when I was in my wheelchair, that I visit the large Canada’s Wonderland amusement park while I was still dependent on it, so that I could take advantage of not having to wait in line. I never got around to it. A day at the Metro Toronto Zoo in my wheelchair, which didn’t have the fuss of constantly transferring on and off of rides, was exhausting enough (for both me and for the people pushing me.)

And the part of me that dislikes Disney smiles a bit to think of anyone sticking it to them. But only a little bit, because overall I find this Dream Tours-Disney World thing. pretty icky.

Even if the disabled people in question are getting a decent wage out of the money that Dream Tours brings in for having them escort people around the park (and let’s hope that they are), I just cringe at this. Not only does it contribute to the cultural perception that disabled people and what they go through isn’t really to be taken seriously, it potentially makes it much more difficult for people who are legitimately disabled to get what the need to enjoy the park. Now that Disney World is aware that people are scamming the system, they’re likely to be much more diligent about who’s going to get access to the disabled passes (which, as people like Brenda Rothman have written about in detail, can be difficult to procure to begin with). In the name of shortening the wait for people that can afford the service (and that are physically able to manage the line-ups), Dream Tours may make Disney World more reluctant to provide services for people who really can’t manage the long wait. Perhaps they didn’t think about that as a consequence of making this service available, but that’s just symptomatic of our culture’s attitude toward disability as a whole: their needs are invisible. They’re invisible.

Hopefully Disney World won’t go that way and will choose to crack down on agencies like Dream Tours who are offering this black-market service, instead of punishing the guides themselves and other disabled people who visit the park. But I feel like it could go the other way too.

And for those that would argue, “The disabled people who are acting as the guides didn’t have to take the job,” you’d be right. I don’t imagine that Dream Tours held a gun to anyone’s head and said, “You have to help us lead rich people around Disney World so that they don’t have to stand in line!” But when you consider that it’s very difficult for disabled Americans to get income support, with cuts to supports and services especially in the face of the Sequester affecting how well they can survive, with the unemployment rate for disabled people in the US still standing at nearly twice what it is for non-disabled Americans…can you blame a person for taking a job for which they’re uniquely qualified, whether it’s the right thing to do or not?

I think that, if I were in that position, the thing that would bother me the most is having people look at me and feel like they’re making the assumption that it’s all I’m capable of doing. That the only marketable job skill I have, so to speak, is the fact that I’m disabled and can get people onto the rides faster at Disney World. It feels like it would be terribly dehumanizing.

And the last thing that disabled people need is more dehumanization. I hope that Disney World keeps this in mind, makes the right choices as it deals with this, and doesn’t end up punishing disabled people for something that isn’t their fault.

Read More Here

Disabled American youth and their families, as well as the people who support them, should take advantage of an opportunity to have their voices heard that’s being made available until May 27. Several federal American agencies are opening an online dialogue on transition planning issues for disabled youth, and need to hear from as many youth and families/caregivers as possible, as well as educators, support workers, agency staff, and policy and lawmakers. The dialogue focuses specifically on issues relating to the transition from secondary school to work life for disabled youth.

Transition Planning – Why is it Important?

This cause is one that’s especially near and dear to my heart, as I did transition planning with intellectually disabled high school students for a number of years. I didn’t understand when I first took the job why it was so important. I now understand that the transition from school to adult life is huge for disabled students, arguably even more so in many ways than for non-disabled peers, and that the question of “what comes next” is often hugely stressful for these students and their families. Transition planning needs to start early, and it needs to be thorough, because a myriad of things need consideration:

• What does the student want to do after graduation? Work? School? Have all her options been explored with her, the way they are with non-disabled students? Does the student understand what diploma track he’s  on and how that affects his options? Is her current academic program  giving her both academic and experiential edge that she needs to meet her goals for post-secondary school life? Does the student have input into his educational planning and course selection?  Will the student have a resume and job-hunting skills when she graduates? 
• Where does the student want to live after graduation? Does she have the skills that she needs to live safely and comfortably in the environment that she desires? If he’s supposed to be learning those skills through a school program, is that indeed happening? If additional skill-building is needed, what are these skills and who can teach them? If the student wants to live at home, what kind of supports will the family require to have her keep living there, given her disabilities? If he wants to live away from home, what supports will he need to do so? Does he want to keep living in his home community, or relocate?
• Who will ensure, that, by the time the student needs them to apply for any needed supports/jobs/a driver’s license that the student will have and have some means of effectively keeping track of a birth certificate, health insurance card (in Canada), and Social Insurance Number?
• What kind of supports does the person need? Can she keep her pediatrician and childhood dentist once she turns 18, or does she have to find new ones? Is she eligible for disability income support? Are medical supports in the home required? Are supports for cooking, cleaning, budgeting, etc, required? Where do people apply for these supports? What do they cost? Is there government funding available to help?
• Are there consent/capacity issues once the student turns 18? Does the student understand enough about his body and medical conditions to make his own medical decisions, or should parents consider trying to get a Power of Medical attorney?  Should a trustee handle disability income support funds, and who should it be? Do the people around the student understand his rights as a disabled adult?

This is really just a taste of what can be involved with transition planning.

Transition Planning – Rarely a Smooth Process

As you can see, doing good transition planning and constructing a plan that best meets the student’s needs can involve a ton of coordination and agencies from a number of different spheres working together.

The transition planning process can hit brick walls in any number of places, and the American government wants to know where these brick walls are.  The joint venture of the the U.S. Departments of Labor, Education and Health and Human Services and the Social Security Administration wants to hear concerns about the “regulatory and legislative barriers that young people with disabilities are facing in accessing employment, education, Social Security and health and human services.”

Comments can be submitted via Web interface until May 27, and may be used to shape future decisions on policy. It’s a unique opportunity of which everyone who’s concerned about American youth with disabilities should take advantage – and that we should encourage other countries to offer as well.

I learned yesterday from the Blogging Against Disabilities Day 2013 post over at Diary of a Goldfish that fellow disability blogger Dr. Elizabeth McClung  has died.

Beth was one of the first disability bloggers that I got to know personally. She was the first blogger, I believe, to put me on her blogroll and for a while we emailed back and forth. I frequently commented on her blog, Screw Bronze, and it was always a treat when she’d comment here.

Beth had a severe and very rare autoimmune/autonomic disease, and was often very, very ill. It didn’t stop her from doing what was important to her, like participating in the Terry Fox run for the last five years, traveling with her wife, Linda, spending time with their friend, Cheryl, and writing and sending over 6000 postcards to whomever indicated to her on her blog that they wanted one.

Even with her ill health, she blogged often. Her blog won awards. She wrote thoughtful reviews of the movies she was watching, talked about her travels and her community activities, and always included lots of art and pictures that she’d taken on her own. Many of her posts show her heart for advocacy for the rights of women,  disabled people and LGBTT people. She also wrote about disability rights for BBC’s Ouch blog until 2008, and did advocacy work in her community and province as she struggled to get the  health care supports that she needed. I experienced the best of what Canada’s health care system has to offer. Beth experienced the worst. Her stories were shocking and deeply worrying, and feeling so helpless while she went through such hardship was difficult. She was a very, very strong woman.

Beth always made me think.  I’m very grateful to her for that.

Goldfish pulled up her Blogging Against Disabilities Day posts, as samples of her work. They are all great examples of Beth’s heart and voice:

The life no one wants and the war on disabled

Disablism within disability

I believe…one day

Those lazy, deceiving disabled. Why won’t they die?

This is my 300th post. Cheers, Beth – I wouldn’t have gotten this far without you.

I shall miss you.

Robert Ethan Saylor, 26. Family photo that first appeared in the Washington Post on Feb. 19, 2013

The Justice Department has advised both the family of Ethan Saylor and disability advocacy groups that the 26-year-old man’s death may warrant an investigation under the Americans with Disabilities Act or the Civil Rights Act. Ethan Saylor, who had Down Syndrome, died after being restrained by three police deputies moonlighting as mall security officers when he re-entered a Frederick, Maryland movie theatre after the screening of “Zero Dark Thirty” for which he’d paid to see had ended, refusing to leave. Read more

The medical examiner found that while Ethan Saylor’s “developmental disability, obesity, atherosclerotic cardiovascular disease and a heart abnormality” contributed to his death, he ultimately died from asphyxia, caused in part from being restrained on his stomach in a position where he could not breathe.  The M.E. ruled his death a homicide, but none of the deputies involved were charged. The grand jury felt that they’d acted in accordance with their training and not responded improperly, given the situation.

Disability advocates disagree, however, arguing that Ethan Saylor was restrained unnecessarily and improperly. Concerned by the precedent that the ruling sets, and by what the entire incident says about the quality of disability training that Maryland police receive, they are calling for an inquiry of exactly went on in the movie theatre.

Ethan Saylor’s Death, the Media, and Conflicting Details

I find it fascinating that apparently we really still don’t know what went on in the theatre, as, according to one source, seventeen witnesses to Ethan Saylor’s restraint, including the attendant that was with Saylor at the time, were interviewed afterward. Sources disagree on a number of basic issues.  According to disabilityscoop.com, the grand jury’s statement described Saylor as “verbally and physically resistant“, while this news accounts say that he merely “cursed at the deputies and used profanity.”.  The distinction is important, as is the definition of “physically resistant”, which could range from not responding to a hand on Saylor’s shoulder to behaviour that put himself or others in physical danger, which might call for use of a safe, properly-administered physical restraint, such as one sanctioned by the Crisis Prevention Institute’s Non-Violent Crisis Intervention.

The fact that there’s so disparate reporting over basic elements of a story that unfolded in a public place really disturbs me. This article does suggest that while Ethan Saylor  hit and punched the deputies, it also says that he idolized the police and loved talking to them, to the point where the family would get complaints that he was bothering them with his requests that they come to his house to visit. It’s also in this article (but no others that I found) that we learn that the deputies weren’t in any kind of uniform during this encounter – they looked like men off the street, engaging him in a physical confrontation that went, according to the autopsy report, from one deputy touching him to all three trying to forcibly remove him, to a point where all eventually “all fell into a heap“, to Ethan being handcuffed. If Ethan did fight back, can he really be blamed?

Executive director of the Down Syndrome Congress David Tolleson, however, speaking with 930 WFMD, was clear on this: ”…there was no emergency. There was no public safety safety issue for Ethan to be restrained on his stomach.” . Family lawyer Joe Epso agrees that the deputies acted improperly, saying that the deputies should have said that they’d prefer not to handle the situation when asked to by the movie theatre manager rather than use three sets of handcuffs to restrain Ethan Saylor’s hands over his stomach.

Ethan Saylor: The Training Issue

Sheriff Chuck Jenkins says his deputies are trained in how to handle persons with disabilities, but is that training wide enough in scope and sufficiently thorough? As a comparison, the mandatory disability training for New York police doesn’t include a component on intellectual disability. In fact, it doesn’t distinguish between intellectual disability and mental illness. Read More  Maryland police Cpl. Jennifer Bailey’s assurances that “all sworn and civilian staff members got training in dealing with people with mental health issues from the Frederick County Health Department in 2011″ also suggests that training on mental health disability is also intended to serve as training on intellectual and/or developmental disability as well.

Even intellectual and developmental disability shouldn’t be regarded as interchangeable terms, let alone ones that are interchangeable with mental health disability.

And anyone who’d been properly trained in doing any sort of work with individuals with Down Syndrome in a context where restraint is considered a potential response to behaviour  should understand (aside from the general principle that restraint should be last resort) that there are physical issues associated with Down Syndrome that may make restraint problematic or even dangerous: heart problems are common among the population in general, their limbs are often proportionally shorter than those in people without Down syndrome, and obesity is often an issue. Training should also include insight into how early-onset dementia(sometimes very early-onset, compared to non-disabled peers) may be a factor in behaviour  and that the intellectual disability associated with Down Syndrome may make it difficult for the individual to understand everything that’s happening and what’s being asked of them. Like all of us, an individual with Down Syndrome’s reasoning abilities may take a further hit in frightening or stressful circumstances.  Behavioural interventions require patience, empathy, and clear communication – not necessarily restraints.

When restraints do become necessary, the Crisis Prevention Institute Non-Violent Crisis Intervention Protocols (which focus mainly on de-escalating a crisis verbally so that a hold or restraint doesn’t become necessary, but that may not have been an option in this case by the time the deputies became involved – it’s not clear from accounts what  Ethan Saylor’s agitation level was when they stepped in) ensure the safety of the individual being restrained and the people doing the restraint. They’re less dramatic and traumatizing than a full throw-down involving three grown men. And you can still immobilize and transport a large person even in a restrained position, and know the minute that they’re in distress so that you can release the hold immediately and re-evaluate the course of action.  There would be many more options than pile-ons and cuffs, and perhaps Ethan Saylor would still be alive today.

Even if they’d put Ethan Saylor in a the CPI-sanctioned two-person hold, transported him out of the theatre and into a room away from the public, and had to have him stay in the hold until his mother arrived and could assist to de-escalate the situation (again, the press seems mystifyingly divided on whether or not she’d been called), that’s better than improperly restraining a man and killing him.

The Bottom Line

Don’t misunderstand me: If Ethan Saylor wanted to see the movie again, he should have paid for another ticket like everyone else. And sometimes safe restraint is a necessary step to ensure everyone’s safety, when all other options all exhausted. But yelling, or even striking in anger, at an off-duty police shouldn’t be a death sentence. If Ethan Saylor died because there’s a gap in the Maryland police’s disability training (or the training for other crisis response organizations), then that gap needs to be addressed. Perhaps they don’t know just how much they don’t know, and so have no idea what questions to ask…or who to ask.

How do we start this dialogue? How do we make sure that this doesn’t happen again?

More on the Crisis Prevention Institute: http://educate.crisisprevention.com/

A family in Watertown on lockdown ran out of milk. Courtesy Police Wives Unite on Facebook.

I’ve been trying to think all week what I want to say about the Boston Marathon bombings.

Being Canadian and having an….intense…interest in US events is often difficult. I get very emotionally involved with what’s happening in America – and yet, there’s very little that I can do. I tried to give money to Obama’s campaign, but the fundraising people didn’t appear to want money from Canadians (which didn’t stop them from asking for it over and over once I ended up on the mailing list – I remember yelling at the computer at one point, “I’ll gladly give you the $5, just let me f*cking do it!”). I couldn’t vote, of course.

And while there’s usually an agency that will take my money in a time of crisis such as last week’s Boston Marathon bombings,  the emotions that the crisis itself brings up leave me feel like I’m stuck between two worlds. There have been natural events in Canada, storms and earthquakes, that have prompted to call friends frantically trying to find out if they’re okay. But I can’t recall ever turning on the news, hearing about a bombing on Canadian soil, and thinking, “Good Lord, so-and-so is there,” while reaching for the phone.

I’m not in the US, and I haven’t experienced with the US has, and I shouldn’t feel it as keenly as I do. But on Friday afternoon I eventually turned off the news and thought, “I can’t take this anymore. It’s too much.”, and didn’t turn on the news again until I saw on Twitter that the second suspect in the Boston Marathon bombings had been caught.

The Boston Marathon Bombings…For What It’s Worth…

Canadians hurt for you, my American friends. Our feelings about what’s happened to you…well, for me, since 9/11, when I heard about the second tower falling on the radio just a few seconds after walking into the kitchen to get my breakfast, run deep. Not as deep as yours, not by a long shot…but you should never think that we don’t care, or that we haven’t stood with you to share the pain of the senseless events of mass destruction that have gouged your country’s psyche over the last few years.

And we celebrate with you when these people that cause this destruction are caught.

As for what I want to say about the Boston Marathon bombings specifically…as I watched the news about the lockdown in Watertown, the thought occurred to me, “What about the people who get services and care through people coming into their homes?” I’m not talking about people like my father, who currently has a nurse come in to help him every day, but without whom he’s already proven (during freezing rain last week) he can easily survive for a day without support. I’m thinking of people that, because of severe medical condition and/or disability, and the inability to perform essential activities of daily living because of consequent limitations, who may have someone living with them or may not (that really doesn’t matter…I lived with my father for several days after I first came home, but if he’d fallen all that I would have been able to was call 9-1-1 and do basic first aid until they got there) who rely on having daily attendant care services.

It scared the shit out of me. I can’t imagine that care agencies in Canada don’t plan for service disruption contingencies like a full-city lockdown. Do they in the US?

Will they now?

Is This What the World Will Be Now?

It seems sad that maybe they’ll have to, that the Watertown lockdown to catch the second Boston Marathon bombings suspect in the  may become a, “It is what it is and now we have to do what we have to,” watershed moment. In the terrible times when everything is upside-down, in the bombings and the Katrinas and the Sandys and the now the plant explosions full-city lockdowns, how *are* we going to ensure that the people who, through no fault of their own, cannot take care of themselves, are still taken care of?

It’s becoming more important than ever make this question one of the ones that demands an answer as America finds a way to navigate this terrain into which it’s, tragically, being pushed. And I know that you get that. I know that you’re already thinking about disaster planning and responsiveness for people with disabilities, because I’ve spoken with very caring, competent people who are working on the problem and raising awareness about it.

You’ve got to find a way to keep these people and the agencies for whom they work funded. Because *every* American citizen deserves to have their needs met in an emergency, and one day you might be one of those people who needs the extra support.

You’ve got the experience and the expertise to show the rest of the world, “This is how you meet peoples’ needs when there’s an disaster. And look at the picture at the top of the post – you’ve got the heart.

Show us how it’s done.

And know that….this Canadian is impressed as all hell with how you’ve held up over the past week. And I’ll not give these people who caused this havoc any more publicity – you’ll not hear me talk about them again, and you’ll certainly never hear me say their names.

Photo courtesy cbc.ca

“I know that you’re optimistic about us, but cautiously so. You are, after all, Canadians,” said Justin Trudeau yesterday after he was elected leader of the Liberal Party of Canada. Justin Trudeau, the son of former Canadian Prime Minister Pierre Elliot Trudeau, took 80% of the votes at the Liberal Party Convention. The tally included votes from a newly-created class of Liberal supporters that could register and submit a weighted vote online; 180 000 people from across Canada participated.  The Liberal Leadership race has 6 candidates, and for Justin Trudeau to have taken 80% of the votes is no small victory.

I’m thrilled. I think he’s great. Not just because I’m a great admirer of Pierre Trudeau, (if you’re not familiar with Pierre Trudeau and what he did for Canada, here’s some reading to get you started: http://www.biography.com/people/pierre-trudeau-9510956?page=2) and not just because I and about half the woman under 3o in Canada fell in love with Justin Trudeau after hearing the powerful eulogy that he gave at his father’s funeral (I was 22 at the time, in rehabilitation in Ottawa, and didn’t even know that Pierre Trudeau *had* children…)

I just really like his worldview and how it informs his politics. So much so that I was one of the 180,000 who registered as a Liberal supporter and then voted online to make Justin Trudeau leader of the  Liberal Party of Canada.

And any candidate that could convince me to affiliate myself with the Liberal Party of Canada in any way, shape or form would have to be pretty damn compelling, let me tell you.  I’ve felt like a Canadian without any appealing political options on the federal stage for about a decade now, voting for whomever seemed the least of all evils rather than a candidate in whom I had any real faith. Plenty of people say that Justin Trudeau got to the Liberal leadership on the strength of his father’s name, and they’re entitled to their opinion, but when you consider the landscape of federal Canadian politics of late and Trudeau’s strengths, he’s not needed the push from his father’s name (in fact, in some areas of Canada it will likely only hold him back; far from everybody has fond memories of the senior Trudeau).

However, I *Am* Canadian

But I’m cautious, yeah. For the same reasons that I’ve become cautious of any politician since I had my stroke, no matter how much I happen to like them or their politics or how moving I find their speeches.

And Justin Trudeau certainly does speak well. In fact, his acceptance speech brought memories of Obama’s past speeches:

• Both men are exceptionally good orators
• Both talked about the middle class and the importance of strengthening it
• Both talked about minority groups and how they live on the fringes of society.
• Both talked about the people of their respective countries being the driving force behind change.
• Both talked about the importance of unity, within their respective political parties, and within society at large.

But nothing from either man about disabled people.

Granted, services and supports for disabled people explicitly, such as income support programs and funding programs like Ontario’s Special Services at Home program for families with disabled children are administered provincially, and Departments of Education operate on the provincial level. Justin Trudeau is the Liberal leader at the federal level.  However, disabled people are also affected by programs that run at the federal level:

• Canada Human Rights Commission and Canada Human Rights Tribunal
• Canada Pension – In Ontario, income support for disabled people stops at 65 and Canada Pension takes over
• Health Canada (through transfer payments to provinces…but this is a big one, affecting primary physician care, ER and hospital care, care in the home, and care in long-term care facilities)
• Veterans Affairs

There are others that obviously affect disabled Canadians just by virtue of the fact that they’re Canadian, but these four departments in particular require special awareness of the fundamental challenges that often come along with being disabled or with caring for a disabled person:

• Poverty due to inability to work and extra expenses associated with equipment, special diet, adaptations to dwelling, specialized vehicles, and/or attendant care
• Discrimination in the employment sector, medical community, and community at large
• Health issues requiring specialized care either within the home or with frequent hospitalization 
• Lack of funding and resources to allow caregivers to adequately care for themselves as well as the people they love
• Increasing lack of options for people that require a high level of care as caregivers age and can no longer physically provide care.

As the population in general ages, these issues become more and more real across Canada and the world, and increasingly pressing. All levels of government need to be involved in generating viable solutions.

Justin Trudeau, I Want to Help

You brought me back to the Liberal party. I didn’t think that could happen.

I’m cautious. Yes, I am. But if you start talking about these things – for me, for the people I support, for Paul Kaune out in Vancouver fighting for the right to manage his own care and for the freedom of all people with disabilities in Canada to do the same http://www.cbc.ca/thesundayedition/documentaries/2013/04/14/documentary-the-golden-rule/- I will throw my full weight behind you.

I desperately want to believe that you’re going to start to turn this around for us. Please don’t let me down.

Justin Trudeau’s acceptance speech: http://www2.macleans.ca/2013/04/14/justin-trudeaus-acceptance-speech/

It’s amazing where I’ve found myself in this recovery journey from my AVM and stroke. After all, it wasn’t until I was volunteering daily with Community Living at age 22, trying to keep myself busy while I waited to hear about whether or not I’d need brain surgery to treat my AVM, that it occurred to me for the first time that I’d maybe enjoy doing support work with intellectually disabled people as a career (after volunteering with Community Living for seven years *and* doing a cooperative education placement with them in high school.) I never figured that I’d find myself here, thirteen years after my stroke, writing about disability issues and feeling very passionate about them in general. And I never figured that, with a weak leg and a left hand that still barely works, that after all the time my father spent being the caregiver for me after my stroke, that I’d end up (gladly) being a caregiver for him.

A Sudden Role Reversal

My father was crossing the street in Toronto about five weeks ago and was hit by a car.

He was fortunate, all things considered. My sister was already on her way to Toronto meet him and was able to get there quickly when a pedestrian used his cellular phone to call her. He was rushed to the nearest hospital and had surgery fairly quickly to set his right femur, broken in three places. He doesn’t remember any of the first week that he spent in the hospital…I don’t remember much of the first few days after my surgery either, which is fine by me.

He’s full of stories about the physical rehabilitation hospital to which he was released, however. And now that he’s home, and I’m staying with him until we can get some support in to make life a bit easier for him as he recovers, we compare notes about our experiences. We did not stay at the same hospitals. I’m surprised by what he wasn’t taught. But I’m also impressed that he’s getting around as well as he is, considering everything that he’s been through.

And it sure is interesting, being on the other side of this. My sister lives too far away to be in the caregiver role (and she’s taken on all the paperwork involved with this, so she’s got enough on her plate).  Since I live so close to my father, it makes sense that I would help out.

I know that I can do it. But sometimes doubt creeps in.

Pancakes, Headaches and Doubts about Myself as a Caregiver

It’s not lost on me, how funny it all is, as Dad stands beside me at the electric griddle, using his walker, trying to coach me on how to flip pancakes. Why did we think that pancakes for dinner was a good idea? I’ve never made pancakes in my life.

Since Dad needs a hand on the walker at all times, we have a full set of usable limbs between us, and it’s just too much coordination for us. And me being the neophyte cook that I am, the pancakes are lumpy, even after we run the mixer through the batter a second time. I feel like the world’s worst caregiver. How do people do this caregiver thing day in, day out? I can’t even make pancakes right.

Everything that I do to get myself through the day seems wildly inappropriate when I’m a caregiver for someone else. What kind of caregiver opens a bag of chips with her teeth? One that doesn’t have two hands to work with…it’s okay for me but *wrong* when I’m doing it for someone else…

And did I do dangerous things that made my caregivers want to scream, “Oh NO, you didn’t just do that!”, I wonder?

(Yes, I certainly did…*sigh*)

My father says that he has gotten a new appreciation for what I went through…well, I can say the same thing.

I’m glad that I can help, because he was certainly there when I needed him.

It’s just too bad that my cooking hasn’t improved just a little bit yet…and that his crock pot seems to have disappeared.

Here’s to caregivers. You’re all awesome.

I have CNN “Early Start” on this morning, as I often do in the mornings, and they’ve just finished a story about basketball

In this March 12, 2013, file photo, Rutgers coach Mike Rice yells out to his team during an NCAA college basketball game against DePaul at the Big East tournament in New York. (ASSOCIATED PRESS)

coach Mike Rice and a video of him physically and verbally abusing members of the Rutgers University team.

The video, which shows Mike Rice shoving and kicking players and hurling basketballs at them, as well as yelling obscenities and homophobic slurs, was shown to Rutgers officials in December 2012. Rutgers suspended Mike Rice for three games and fined him $50 000. However, now that the video has been broadcast on ESPN and gone viral, an outcry has gone up over why Mike Rice wasn’t fired. Lebron James and New Jersey governor Chris Christie have weighed in, and the head of the New Jersey Assembly has even called for Mike Rice to fired.

Don’t Get Me Wrong…Mike Rice Should Be Fired!

It’s by no means a bad thing for a society to be protective of its young athletes. It’s certainly appropriate, when anyone abuses a position of power for them to be held accountable, as Jerry Sandusky was and as it looks like Mike Rice will further be. The video is difficult to watch and it’s understandable that people are outraged that Mike Rice wasn’t fired on the spot when it surfaced.

Even as I’m typing, there’s an interview going on with an expert that’s saying that Mike Rice did is unequivocally abuse and that he needs to be fired because there’s no context in which his actions are appropriate. My question, however, is why these stories get *so* much coverage and generate so much outrage when when only the most minimal of coverage gets given to the daily situation of:

• What the UN has officially declared torture going on at the Judge Rotenberg Center, where electric shock is used to “discipline” disabled children
• Restraint and seclusion going on (with no policy to govern their use in the US) in public special education classes.
• A pattern of abuse that was identified in New York state group homes for intellectually disabled people approximately eighteen months ago by the New York Times. http://www.girlwiththecane.com/more-on-new-york-state-group-homes/

It’s great that New Jersey Governor Chris Christie and the head of the Assembly felt moved to make a statement about the Mike Rice situation…I wonder why Christie  didn’t feel like he or any of his people needed to attend February’s Joint Legislative Hearing on the closing of two institutions in New Jersey? Are the people affected by that not important too?

I’m not suggesting that concern for abused athletes is misplaced in inappropriate. It just seems sad to me (and frustrating) that even when it comes to abuse, it just seems like some stories are more “worthy” of coverage and immediate action than others, and that, as usual, disabled people and their concerns seem to be consistently getting pushed into the background by the media and government.

http://www.nytimes.com/2013/04/03/sports/ncaabasketball/rutgers-coach-mike-rice-facing-scrutiny-after-video-airs.html?_r=0

I don’t usually blog on the weekends, but a friend brought something to my attention today that’s really annoying me. A new abortion law in North Dakota’s is the first to prohibit abortion on the basis of the fetus having a genetic “abnormality” (Disability Scoop‘s word, not mine) detected prenatally or the potential for a genetic abnormality. It’s one of three new abortion laws passed  in North Dakota this week that make up the tightest control in America yet over the circumstances under which a woman can have an abortion.

And it’s hypocritical nonsense.

“Tell Us What You *Really* Think About the New Abortion Law in North Dakota, Sarah…”

I realize that, to regular readers, this may seem like a very odd stance for me to take on a law that would prohibit abortion on the basis of even the potential of disability. One of this blog’s most accessed posts is the one that I wrote on how wrong I thought it was that women who are carrying a fetus with Down’s Syndrome often experience pressure from doctors to abort it.

The idea that presence of a disability or the potential for disability is sometimes the deciding factor in whether a woman carries a fetus to term makes me very, very sad. I think that it speaks volumes about not only general attitudes toward disability, but also to a fear that the resources to adequately care for a disabled child simply aren’t available (which could be part of the reason why it’s difficult to find adoptive homes for the disabled children who end up in the child welfare system).

I’ve seen how little social support is available, and how the little that is available keeps decreasing as the years pass.  I can understand a fear of not being able to cope with the parenting challenges, especially in families already facing challenges such as poverty.

I do try to (usually) understand even decisions that make me very sad.

And I keep always coming back to my belief that a woman has the right to choose what she wants to with their own body.

So I don’t feel like I can judge any women for deciding to abort a fetus with a disability or the potential to develop a disability, as sad as the decision might make me.

But I Judge the Hell out of the Lawmakers that Put this New Abortion Law in North Dakota in Place

Yes, I do. Because I think they’re being disingenuous. I truly believe that this new abortion law in North Dakota is merely another effort to control access to abortion, and that they’re using the restriction on fetuses with disabilities or the potential to develop disabilities because it’s a convenient way to do so. And just as disabled people aren’t here to be society’s “inspiration”, they’re not here to be pawns either.

I submit that the lawmakers that put this new abortion law in North Dakota together that if they  were truly concerned about lowering the number of fetuses that are disabled or that may become disabled because of a congenital condition, they’d concentrate on making these social reforms rather than making an abortion law about fetuses with disabilities:

• Make adequate funding for respite, personal development, special diet and equipment, early intervention programs, and a case coordination worker available to families of disabled children from the toddler years until adult services kick in.
• Recognize that because of expenses associated with raising a disabled child, a family that might be “well off” otherwise may need to rely on safety net services such as food stamps and Medicare.
• Develop ways for parents and caregivers to connect and support each other, to further their education about caregiving issues, and to quickly access appropriate supports in a crisis.
• Ensure that schools are properly following the IPRC process for disabled students, including the piece about transition planning for when a student moves from elementary to junior high, junior high to high school, and high school to post-secondary school or the job market.
• Explore options for community-based residential placements (and not just group homes). Give disabled people a fighting chance to be community members. Develop ways to monitor the safety of of these placements on a regular basis and to provide a timely and thorough response to reports of violations.
• Work to identify and eliminate ablism within government systems and start discussing how government can help the private sector with the same process.
• Start acknowledging that the unemployment rate for disabled people in the US is much higher than for non-disabled people, and plan how to address it.

If I saw even one of those those things moved up on the priority list along with this new abortion law in North Dakota, I might believe that this is really about protecting the lives of disabled people.

But I really don’t think this new abortion law in North Dakota has to do with disabilities at all, so I’m not going to hold my breath.

Are you?

More about the new abortion law in North Dakota: http://www.disabilityscoop.com/2013/03/27/in-first-abortions-disabilities/17593/

I like stories to which I can relate. And when I read this story, about which many of you may have already heard, about autistic 7-

Arianna Hill kissing her “fixed” burger. Photo by Anna MacLean

year-old Arianna Hill in Midvale, Utah’s Chili’s restaurant who was brought the “broken” cheeseburger, I found myself nodding. I also found myself thinking, yet again, about how many issues arise in life (and not just in interactions with disabled people) because we make assumptions (myself included…I can’t tell you how many times I said to people I supported, particularly in the early stages of my career, “I made an assumption and I apologize. I’ll do my best not to do it again.”).

Arianna Hill’s whose sister, Anna MacLean, took her to Chili’s last weekend before going to see the Easter Bunny. Arianna Hill ordered a hamburger which server Lauren Wells cut in half. Chili’s does this with children’s burgers to make them easier for the children to eat and to see that the burger is cooked to the right temperature. However, when Arianna Hill received her burger, she declared it “broken”.

Seeing that this seemed to have put a damper on Arianna Hill’s earlier high spirits, Wells ordered another another burger for the girl free of charge. Manager Brad Cattermole apologized personally to her, brought her some free fries to enjoy with her burger, and all was well.

MacLean was very impressed, saying that Arianna Hill “has to have certain things in a particular order at all times. One slight change in her routine can change the course of the day instantly,” and that she “did NOT expect such kind and compassionate mannerisms from Lauren and Bradley” given what she’s heard that other autistic families and their children have experienced in restaurants. http://www.huffingtonpost.com/2013/03/26/waitress-fixes-broken-cheeseburger-video_n_2957019.html

“No Butter, Please”

How can I relate to this? Besides knowing what’s like to have to say, “I made an assumption and I’m sorry,” I’ve sent back food in restaurants because of assumptions. Not often, by any means – I’m part of a family that loves food and that isn’t all that picky. There are very few things for which I’ll send back food in a restaurant, or not eat it if I’ve ordered it. I’ll definitely send it back if it’s undercooked (especially meat; I’ve had food poisoning and I don’t want it again, thanks).

But I will send back sandwiches that have come with butter or margarine on them.  I don’t like butter or margarine on bread at all, and I really just don’t like putting myself in positions where I even have to try to choke it down, Something about the texture makes it just…yucky. Most times I remember to tell servers, “No butter, please,” but I occasionally forget. Most restaurants are very accommodating and will make me a new sandwich (and more and more avoid the issue altogether by just not putting butter or margarine on sandwiches anymore) They seem to see that it’s an assumption that everyone likes butter or margarine on their sandwiches, the same way that Wells and Cattermole realized that they’d made an assumption that all children want their burgers cut in half.

Arianna Hill – Good Job, Chili’s

What I really like about this story is that Arianna Hill and her sister weren’t judged because her request was unconventional. It would be easy enough for Wells and Cattermole to say to the family, “What’s the difference? Why does her burger have to be in one piece instead of cut up?”. But they didn’t. They saw that a customer was unhappy and they took (what turned to out be very easy) steps to rectify the situation. And that’s what the bulk of accommodating disabled customers come down to – not hugely expensive changes to a physical building (although these are important), but small actions every day on behalf of all employees.

Including adoption of a policy where staff ask rather than assume:

• Ask the customer if they found everything that they wanted, rather than assume. He might have some disability that prevented him from reading signs, reaching items on high shelves, hearing store announcements, etcetera, that made it difficult to get everything that he came in for. 
• Ask someone who looks a little lost, “Can I help you find something?” She might be feeling overwhelmed by all the sensory information in the store.
• In Arianna Hill’s case asking, “Would you like your burger cut in half?” would have been a good way to “ask, not assume.”  But good for Chili’s for handling it the way they did.

Disabled people spend money at stores and restaurants too, and we talk about the places that are particularly aware or especially unaware of our needs. It’s worth it, in my opinion, for especially large corporations to insist that their staff training includes disability sensitivity training.  Because all people in the restaurant business business, in the ideal world, should have handled the situation with Arianna Hill and her “broken” cheeseburger as well as Lauren Wells and Brad Cattermole of the Chili’s in Midvale, Utah did.