I mentioned on my blog entry on Monday that I’d come across a video that I wanted to post, but that I was still waiting for some information. I haven’t got the information that I was looking for yet, but I’m going to post the video anyway…and I’d like to get your impressions on it. It’s about a young man with autism in Edmonton who has started his own delivery service: Anthony At Your Service.
Anthony At Your Service: Meet Anthony and His assistant, Mike
When my friend pointed me to this video, I watched it a couple of times, and thought, “This is the way that we should be supporting people with disabilities to set and meet their goals.”
Person-centred, flexible supports are effective supports.
I have a feeling that Mike isn’t an agency employee, but probably an independent worker paid for out of some sort of government funding (that was the information that I was trying to get). I’m wondering as individualized funding starts to become the funding model of choice in more and more places, whether people will choose to hire one-on-one workers as opposed to purchasing supports from agencies because agency programs are losing their ability to be flexible and easily responsive to peoples’ needs.
I have much, much more that I want to say about this…but I’ve tried to write this blog about ten times now, and I just can’t seem to easily get out what I want to say. So I’ll leave you today with some questions:
Does this strike you as a good way of supporting people with disabilities? Why or why not?
What did you think about Mike’s observations about the sounds that people make, versus the sounds that Anthony makes?
What do you like best about this video?
Would you use “Anthony At Your Service” if you lived in the Edmonton area?
I was going to post an awesome video today about a young man with autism that’s living a life he loves in his community with the support of his family
and a worker. But there’s some more information that I want to find out first, and I came across a podcast this weekend that I found interesting. It’s a bit of a time commitment (half an hour), but well worth the listen. It definitely provides some context for those that wonder why it’s such an achievement that we’ve gotten to a place where people with developmental disabilities of all types and degrees of severity live and work and in community settings, and why advocates keep pushing for even greater degrees of community integration. For people that are familiar with the history of abuse and oppression of people with intellectual disabilities in government-run institutions like Huronia Regional Centre, parts of the podcast won’t be surprising…but I’ve known the history for quite some time, and was definitely taken aback by some of it. Know in advance that some of it is difficult to listen to.
“The Gristle in the Stew”, created and narrated byDavid Gutnick, is largely an interview with Marie Slark and Patricia Seth. They are the two women who are responsible, with support, for launching the first of 12,000 action suits for damages against the Ontario government by people with intellectual disabilities who lived in the provincial institutions. Marie and Patricia Stem lived in Huronia Regional Centre, the largest and oldest of Ontario’s institutions. Huronia Regional Centre is now closed. It was orginially called “The Orillia Asylum for Idiots” when it opened in 1876. You can hear how much the women hated and feared the place in their voices, as they’re interviewed on a visit to the site.
“It was a bad place,” says Patricia of Huronia Regional Centre, on the way there.
A former resident (David McKillop, also a plaintiff in a class action suit) of Rideau Regional Centre, another instituion that is now closed, is also interviewed.
For a long time, parents were told that institutionalization was best option for children with intellectual disabilities who, because they were so “limited”, would require full-time care and never learn to do anything for themselves. I’ve seen many of the people who grew up in these institutional environments, under the “care” of staff who assumed that they’d never be able to learn any skills, go on to live semi-independently and independently once they went on to live in communities. They have jobs and friends, and participate in community activities, and what I’m sure were dark times in the institution doesn’t seem to hold them back.
That really impresses me, because I’m sure that these sorts of things would hold me back if they were done to me as child:
Being dropped off by my family at a strange place and being told by them that I’d be there until I died (Patricia).
Beatings, slaps…being kicked in the groin repeatedly (David)
Being locked in cupboards
Having my head held under hot water (Patricia)
Being made to lie facedown on the ground for punishment and having people step on my head if I turned my face. (Marie)
Being turned upside down and held by my legs while water was run over my face (Patricia, who says that this felt like she was drowning).
Having all my teeth removed for “safety” reasons
Being sexually abused (David)
Being told that if I tried to report any of this, I’d be punished, and that staff would get the other kids to abuse me (Patricia)
Being punished by having to hold heavy pails of water in both hands for extended periods of time (David)
So Slow to Move, Even Though They Knew – Closing Huronia Regional Centre
Journalist Pierre Berton wrote a column about the conditions at Huronia Regional Centre in 1959. He wrote about the terrible overcrowding and unsanitary conditions, the stench of urine and feces in the living quarters, and his belief that Huronial Regional Centre was a firetrap. But it was another 50 years until the last residents left the Ontario institutions and all of them, including Huronia Regional Centre were closed for good.
According to the documentary, the government says that Huronia Regional Centre was managed in accordance with the standard of care at the time, and responds to allegations of abuse with “Prove it.” Patricia has a made a list of the people who abused her.
Ontario’s institutions are closed, but the other provinces haven’t followed Ontario’s lead, and there are still institutions open in the US. It’s time for all of them to close. Even if they all employed all the best practices of client care for institutional care, it’s significantly cheaper (with better outcomes for clients) for governments to fund people to be in community residential settings.
And institutions clearly haven’t used best practices to care for people. Let’s do something about this.
“The Gristle in the Stew” has already won several awards.
If you’re looking for something to do this weekend and maybe looking for a worthy cause that needs your time and energy, consider taking a walk down to your local Goodwill location on Saturday at around 10:30 am. Perhaps it will be one of the 80 at which the National Federation of the Blind (NFB), the Autism Self-Advocacy Network (ASAN), and the disability advocacy group ADAPT have organized one of their informational protests regarding Goodwill’s compensation policy for people with disabilities.
People With Disabilities Working for as Low as $0.22/Hour at Some Goodwill Locations
Regular readers may remember that earlier in the summer I wrote a post about this when it first became public knowledge. I thought the lowest that people were being paid was $1.44 an hour. As you can see, apparently it’s been much lower in some places (http://www.disabilityscoop.com/2012/08/21/protests-target-goodwill/16285/). The NFB and other American disability organizations called for a boycott of Goodwill in America until they stopped the (sadly, legal) practice of giving locations discretion to pay workers with disabilities substantially below minimum wage. 64 of the 165 Goodwill-affiliated agencies in the US engage in this practice.
Goodwill argues that the certificate that allows them to pay people with disabilities below minimum wage is a “tool” that facilitates job creation for people that would otherwise find it very difficult to find work.
I don’t know what’s scariest about that “justification”: that Goodwill actually believes that paying anyone $0.22 an hour to do anything is a “job”, that they have the guts to put themselves out there as believing they do…or that there are people in this country, with or without disabilities, that need employment that badly or put so little value on the work that they they can do that they’d actually do work for that little money. It’s a whole lot of wrong, on a whole lot of levels.
Breaking It Down a Little Further
It’s difficult to understand how Goodwill doesn’t see how this creates more issues than it solves.
It’s exploitative. No two ways about it.
It does nothing to assist people with disabilities who are living in poverty to better their financial situation.
It sets a poor example for the rest of the business community: “Goodwill does it, and we all know that they do good work for everyone, so it must be okay.”
It sets a poor example for the community, the country, and the world. Do we really need any more examples of people with disabilities being devalued?
As I said, the informational protests are happening at Goodwill locations across the country this Saturday, August 25, 11 am – 1 pm local time. You can keep tabs on what’s happening by following @NFB_Voice on Twitter. Also check out this article for anything you’d ever want to know about the protests (including how to organize one in your area if one isn’t going on, complete with promotional materials) and the Goodwill controversy: https://www.nfb.org/fair-wages#Protest
Spread the word and try to get to a protest yourself if you can!
She wasn’t sure what she’d say, so she suggested that we ask you if there’s anything in particular that you’d like to know.
Questions could include (but certainly aren’t limited to!):
How do you train a service dog?
What do you use a service dog for?
Why can’t I interact with a service dog while it’s working?
What’s the funniest/most embarrassing thing that ever happened to you when you were out with a service dog?
Sharon Wachsler is *the* person to answer your questions. She trains them, she uses one herself (Barnum, the handsome bouvier at the top of the post), and she’s been through the heartbreak of having to say good-bye to her beloved service dog, Gadget. I didn’t realize just how strong the relationships between service dogs and their owners are, until I started reading Sharon’s blog at http://aftergadget.wordpress.com/. Please go take a look when you get a chance!
Sharon Wachsler says that she will attempt to answer all the questions. From her post on this at her blog: “I say “attempt” because I might receive a question that I can’t answer. For example, if I was asked what it was like for me to have a guide dog or train at a service dog school, I wouldn’t be able to answer those questions directly, because I don’t have those experiences. But I might ask one of my friends who has such experiences if they would be willing to answer. If I can’t give a complete answer to a question, to quote Albus Dumbledore, “I shall not, of course, lie.”
I’m really looking forward to seeing what kind of questions you guys come up with, and to learning more with you about this fascinating topic! We’ll be accepting questions for the next two weeks.
I have a friend who actually does a lot of work in the emergency preparedness area, and who has been a part of the teams assisting people with disabilities in emergencies infinitely more serious than the one I encountered last night. But a night in the dark in my apartment building was definitely enough to make me think about emergency preparedness and about how much more vulnerable people with disabilities and chronic health conditions are in emergency situations…including myself, because my emergency preparedness plan simply isn’t good enough.
Emergencies in My Apartment Building
Due to the demographics in my area and the nature of my apartment building, most of the residents are seniors. Some are in very good health and, like me, require very little support to live in the building. Some aren’t in such good health, and rely on a lot of medical home supports and other community supports and/or support from family and friends to remain living independently. The management helps as much as they can by making sure that people sure that have lots of notice for events like maintenance work in the building and community (including planned power outages that are going to last for several hours) to make plans.
Of course, not every power outage is planned. But the unplanned ones rarely last long. Our hydro crews, for all our complaining, are very good at getting things back on track quickly. However, whatever knocked out our power last night did an especially good job – it was out from 8 pm last night to 4:30 am this morning.
Emergency Preparedness – I Need a Better Plan
My normal emergency preparedness plan for a situation like last night’s is to read until it gets too dark and then go to sleep until the power comes back on. But this time I was acutely aware of a few things:
I’d been on the phone long-distance with a friend who was possibly going to be worried that I’d suddenly disappeared. I don’t have a cel phone. I couldn’t email her, because my modem was, of course, not working. I couldn’t even call her if I could track down a phone that worked, because her number was trapped in *my* phone, and I wasn’t sure I had it written down anywhere else.
Going to my father’s was out of the question – how was I going to call him? I’ve only been without a cel phone for about a year, and feeling as cut off as I did last night was absolutely unnerving.
I couldn’t find my flashlight and it was getting dark.
I ventured out into the lounge after a bit to see if anyone was around who’d heard anything about when the power was coming back on. I was able to use someone’s cel phone to leave my father a message with my friend’s email address, asking him to email her and let her know that I was okay. And I realized that other people were having emergency preparedness issues too.
Emergency Preparedness – When Things are Unplanned
A woman sitting in the lounge had come down earlier in the elevator to visit with friends. She was now stuck in the lounge until her daughter could get over there (and she wasn’t sure when that was going to be) to help her get herself and her oxygen tank back up the dark stairs.
As I talked to her, I found myself starting to wonder about other people in the building with health problems, and what their emergency preparedness plans were. We knew by now that it would be a while before the crews could get the power on. What if it stretched into tomorrow? I knew that the management would bring by bottled water for drinking, but people would need to start flushing toilets…the nurses would need water for medical treatments…without the elevator in service, some people wouldn’t be able to get out of the building…as I continued to think, I got more and more anxious about the prospect of prolonged power shortage.
In my own apartment a bit later, there was still enough light that I easily changed my clothes and went to bed. But when the cats got me up later in the night for food (I don’t know how much later because my digital clocks weren’t working and my IPod wasn’t charged), I had the treat of trying to navigate my apartment with no light at all. Not safe. Not smart of me, to misplace my flashlight.
Important Things to Consider
How would I have handled all this a few years ago, when I was considerably less mobile? I don’t know that I even have a first aid kit if I fell now and hurt myself…
How would I have handled this if I’d had an intellectual disability and my support person wasn’t coming in until morning?
If you’re supporting people in these situations, you need to consider if you/your agency has an adequate, understandable (for you/staff and for the person) plan in place for each individual. Don’t wait until it happens and try to cobble something together then.
And…what’s *your* emergency plan? Is your level of emergency preparedness acceptable?
Philadelphia hospitals, I’m now caught up on what’s happening with Paul Corby. Congratulations, you’re the first in the blog to hear this in Paragraph One of an entry: Meet me at camera three.
Because, seriously, what are you thinking?
Paul Corby’s Story
Let’s bring everyone else in on this, shall we?
Paul Corby is 23 years old and happens to have Pervasive Developmental Disorder Not Otherwise Specified, which is an autism spectrum disorder. He also needs a heart transplant. The doctors at the Hospital of the University of Pennsylvania don’t think he’s a good candidate, “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”
I admit that while I’m very grateful for the successful resolution of Amelia Rivera’s case at the Children’s Hospital of Philadelphia, I’m hotter under the collar about this than I used to be. I’m getting really tired of reading about people with disabilities being discriminated against by the medical community because of outdated ways of viewing them and their potential.
Assumption of Bad Outcome
Penn Hospital, this part’s for you in particular.
I see here an assumption that because Paul Corby has an autism diagnosis, there’s automatically such a large chance of a bad outcome that a heart is better off with someone else.
I know that donated organs are scarce, and that a lot of consideration has to go into especially who gets a heart. Yes, there could be aspects of stereotypical behaviour associated with autism that could make the recovery process associated with a transplant difficult. However, I saw a heck of a lot of people when I was in stroke rehabilitation and recovering that had a lot of difficulty with the process, and it wasn’t because of any diagnosis that I knew of…they were just people having a difficult time with recovery! Regular readers know that I went through a few difficult periods myself, that certainly weren’t anticipated and required some extra support from staff while I worked out whatever was happening…but the support got put in place, and the issues got worked out. You can’t assume that a diagnosis automatically means that a person can’t deal with transplant issues (or that a lack of one automatically means that they’ll be able to, for that matter).
This attitude of “Hands off our heart because all these things could happen because you’re, you know, autistic” is just blatantly discriminatory, offensive to people with disabilities everywhere, and suggests that you don’t have much confidence in the team that would be offering Paul Corby care afterward. Are you so frightened of the word “autism” that you doubt your ability to work with this young man, who is obviously creative, accomplished and, most importantly seems perfectly capable of expressing what he needs and wants? And who seems to have a loving family committed to assisting him to meet the challenges in his life? It seems to me that your support teams would have had to deal with individuals that present many more barriers to positive outcomes after serious medical procedures.
Running Down the Case
Here’s another article about Paul Corby’s struggle:
My niece, Gillian, is celebrating her first birthday on August 20. I will be attending her birthday party next Sunday. I’ve been thinking a lot lately about how having the stroke changed (or didn’t change) my feelings about having kids
Gillian – A Force to be Reckoned With, And Not Yet a Year Old
Gillian has got quite the personality for such a little girl. I saw her over the weekend, and she’s almost walking on her own – she doesn’t quite have the confidence to let go of Mommy or Daddy’s hand yet, but she’s so close to taking off by herself. She talks constantly (some of it is even words!), loves looking at her board books, and is a total ham for the camera. She’s got a big, broad, smile and a laugh that breaks my heart. She’s just precious.
Being a Post-Stroke Mom
Having kids isn’t out of the question for me. It would require a lot of planning. I take some medications (for the seizure disorder that I developed after the stroke) that aren’t safe for a developing fetus, so I’d need to be slowly switched off of the ones I currently take and onto ones that would be safe for the baby. I’d want to talk with my neurosurgeon about the possibility of another stroke.
I’d think that it would be remote at this point, but it’s always in the back of my mind that the post-surgery stroke didn’t happen at the AVM site. I’ve never been exactly sure why that stroke happened, actually.
And there’s the issue of my weak side caused by my stroke, of course. My sister has a friend who knew of a women who raised several babies using one hand – she apparently got so good at it that no one thought anything of it. I believe it, but I can’t imagine how difficult it must have been to figure out how to do.
Lots of “Mothering” Opportunities…
The logistics of having my children seem difficult to work out for me. Someone asked me recently if the prospect of that makes me sad. I guess on some level it does, a little bit. But I’ve been hedging on the idea of having children in adulthood since high school. It’s not that I don’t like children – I very much like them. When I was younger, I was frightened that I wouldn’t be a very good mother. As I’ve gotten older, I’ve just never had the sense that other women seem to experience, that having children is something that I need to do.
I look around me and I see all sorts of children in my circle of influence that need a strong female presence in their life, and I think, “I can be that for them if they need it…if they want it.” And I don’t think that it’s a coincidence that in the job I had supporting youth with intellectual disabilities, I’d often slip and call them “my kids”. I know the importance of professional boundaries and can easily keep them, but in my heart I’m very attached to and protective of all the people I support, the young people included…even the ones who come to me with many supports already in place.
And when Gillian breaks into a smile when she sees me, it’s enough. I feel very fortunate just to be here after the surgery and stroke to be a part of her life, to be able to watch her grow and to be one of the women surrounding her with love and support.
I’ve commented before on the fight that Joe and Chrissy Rivera have waged with the Children’s Hospital of Philadelphia (CHOP) to get their three-year-old daughter, Amelia Rivera, a kidney transplant. In January, Chrissy blogged that syndrome that a CHOP doctor had indicated to the family that Amelia’s Wolf-Hirschhorn diagnosis created concerns quality of life concerns, given that she’s “mentally retarded”, that made her ineligible for transplant. The Riveras did not want her placed on the donor transplant list, as Chrissy was willing to donate a kidney. They were asking for the hospital to do the surgery.
Wolf-Hirschhorn syndrome is a chromosomal condition, It causes physical and intellectual disability, as well as a variety of severe health problems.
The hospital denied the allegations that they discriminate on the basis of intellectual disability, as Amelia Rivera’s case implied. However, once the story hit the national news, people quickly decided that something had to be done. An online petition demanding that the hospital do Amelia Rivera’s transplant surgery got over 50,000 signatures.
I don’t know about the rest of you, but I find the idea of a medical system where people are deemed eligible or ineligible for transplant surgeries based on the medical professional’s assessment of potential quality of life profoundly disturbing. I’ve already heard too many stories about doctors (and other professionals who use the medical model of disability) who would rob people with intellectual disabilities of fundamental rights (and this has, at times, included the right to life) because of quality of life/”contribution to society” issues.
It’s a way of viewing people that not only makes major assumptions about the person’s capacity to have a fulfilling life (assumptions that are inappropriate in the extreme for a three-year-old who almost two decades of development ahead of her), but of the capacity of the people around her to assist her to develop a life that she finds meaningful. I’ve worked almost exclusively with young adults and adults with intellectual disabilities in my career, and been thrilled with how far some of them come with setting and meeting life goals in a very short time with good support from formal and informal networks. To say that “This three-year-old isn’t going to have a good quality of life because she’s mentally retarded” and then deny a treatment on the basis of that is criminal to me.
Yes, good for CHOP for coming around and seeing that they should be doing this transplant surgery for Amelia Rivera. However, it saddens me that they had to come around at all. For anyone who doesn’t think that people with disabilities don’t face hurdles in society, ask yourself if any doctor, ever, would have said about a three-year-old without a disability, “Well, I don’t think that this child will have a good quality life, therefore I think she’s ineligible for transplant.”
Three years old.
I submit that it wouldn’t happen. What do you think?
Thank you to everyone who signed the petition and fought for Amelia Rivera.
I have to admit that I’ve been aware of this story only peripherally until last night. I knew that there was an inmate in Texas with an intellectual disability whose execution date was approaching. I knew that his lawyer was fighting for a stay. I think I thought that I had more time to research the case and eventually cover it here. And then last night, I learned the inmate’s name: Marvin Wilson.
I read on my Twitter feed that the Supreme Court in Texas had officially said that the execution could go through. I read that Marvin Wilson’s last assessment said that he had an IQ of 61. I saw the tweet at 7:45 pm, 45 minutes after his execution.
I called a friend and I cried and cried.
Tears for Marvin Wilson
I guess I should put out there that I’m rather strongly anti-death penalty (like that’s going to shock any of my regular readers). Especially so in a circumstance like this. I do agree that it should be unconstitutional to use the death penalty on people with intellectual disabilities.
Not that Wilson shouldn’t have been punished for his crime (which was allegedly murder; some evidence suggested that he was not the shooter, which the Supreme Court chose not to address.). But, discipline is a dicey issue right from early childhood for a person with an IQ that low. We have to first ask ourselves if they truly understood that what they did was wrong, and find the best way to get that across. Traditional discipline methods don’t always do the best job at that. Was prison? I don’t know. I don’t know much Wilson understood about his actions, or about prison, or about how he connected the two. My concern is more with how he connected his actions and his death. Did he know that he was going to die? Did he understand why?
My Hopes for Marvin Wilson
I’d like to think that Wilson’s lawyers worked hard with him to make sure that he understood everything in the process that was going on to the greatest extent possible. I’d like to think that the prison was fully cooperative in allowing Marvin Wilson as much time with his lawyers or some kind of support services as needed to work through these issues. The justice system can be terribly confusing for people with intellectual disabilities.
There’s another part of me that hopes that Marvin Wilson didn’t know that he was going to die, because I’m scared to death that he really didn’t have the capacity to understand why. I don’t want to think of him dying in that kind of fear.
Ultimately I guess I just hope it was quick and that Marvin Wilson didn’t suffer.
And I hope that you lose some sleep over this, Scalia. The critera that you used to decide whether or not he had an intellectual disability, in the absence of an assessment that you trusted, was bullshit. You should have had another assessment done if you were concerned. There was plenty of time.
This was a man’s life you had in your hands. Shame on you.