Tag Archives | institutions

Happy Thanksgiving?

I wanted to write a post about how one of the things that I’m grateful for thisthanksgiving Thanksgiving is how far people with disabilities have come. But I didn’t quite get there.

Happy Thanksgiving…*sigh*

I was going to start my Thanksgiving post off with this:

“On Thanksgiving Sunday, my father and I watched “The King’s Speech” together. My father told me that King George VI had a younger brother, John, who was basically kept in isolation from not only the public, but from the family’s day-to-day life because of epilepsy and perhaps autism.  His mother visited him often, and he had a cottage and a full staff of his own, but he was kept out of the public eye and court life because he was “different”. Segregating a child from the public eye that way seems as alien an approach to dealing with disability to me as shutting a child with a disability in an institution and forgetting that they exist…or, as a health care professional, suggesting to parents that it’s in everyone’s best interest to do that.”

I wanted to suggest, in my Happy Thanksgiving post,  that we’ve come oh-so-far since then, with so much success in closing institutions and people with disabilities being treated so much better by the medical community. But then I remembered the posts that I’ve written about discrimination in granting organ transplants, the attitude that some of the medical establishment holds that babies with Down’s Syndrome should be aborted or denied life-saving treatment after birth, and the recent story out of England about the man with an intellectual disability who found a DNR that he’d not consented to in his suitcase when he returned home from a hospital. I remembered the conversations that I’ve had with colleagues about how group homes are really just little institutions, where abuse can happen just as easily as it did in the larger ones that people fought so hard to close.

I remembered that for several years after my stroke, there wasn’t a truly accessible restaurant in my town, and that legislation mandating that government buildings become accessible in my province was enacted only in 2005. Right now, an overhaul of the main street in my town has the sidewalks torn up on both sides, making passage practically impossible for anyone using a manual wheelchair and difficult for anyone with any sort of mobility or balance disability. No one thought of this, apparently, or cared enough in their hurry to get the job done to consider that they should only tear up one side of the street at the time.

I remembered that Henry Miles Frost has been petitioning since before school started to go to the school that’s just down the street from him instead of a special school somewhere else. Despite all of the people that stand with Henry, the school board won’t be convinced. http://www.facebook.com/IStandWithHenry?fref=ts

I remembered Britain, and how people with disabilities have been struggling there the past year as their benefits have been slashed.

What do you do when it’s difficult to remember the positives?

Happy Thanksgiving. Sorry I’m late…

By the way, Prince John died when he was 13. This blog post talks about his story in more detail: http://www.sockitmama.com/2011/04

 

Comments are closed

“The Gristle in The Stew”: Stories from Former Residents of Huronia Regional Centre

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

huronia regional centre

By the 1960s, the Huronia Regional Centre had more than 2,600 residents – 700 more than the facility was designed to accommodate – with more than 1,000 on the waiting list. Source: ‘One On Every Street’, an information film for families. http://www.mcss.gov.on.ca/en/dshistory/firstInstitution/firstInstitutionPhotos.aspx

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.

http://www.cbc.ca/player/Radio/Radio+Summer/Global+Perspectives/ID/2251524089/

(try this one of the link above doesn’t work – thanks, Tim! http://www.cbc.ca/player/Radio/The+Sunday+Edition/ID/2170549480/)

Huronia Regional Centre – Telling the Stories

“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).
  • Being overmedicated
  • 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.

A post that I wrote about Willowbrook State School, an American institution for people with developmental disabilities: http://www.girlwiththecane.com/celebrating-developmental-disabilities-month-with-inspirational-stories/

More about Huronia Regional Centre:

http://www.mcss.gov.on.ca/en/dshistory/firstInstitution/huronia.aspx  This is a government website. Note what they do and don’t talk about.

http://www.theglobeandmail.com/news/national/a-chance-for-huronias-invisible-to-be-seen-and-heard/article1387936/

http://www.theglobeandmail.com/news/national/judge-certifies-1-billion-class-action-suit-over-huronia-institution/article1387937/

Comments are closed

Music Therapy and Intellectual Disability

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

Roia Rafieyan’s Work

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

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

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

Person-Centred in a Non-Person-Centred Environment

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

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

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

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

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

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

Comments are closed

A Downside to Closing Institutions?

The movement to close institutions for people with intellectual disabilities has a downside. Michelle Bach, institutionsexecutive-vice president of Canadian Association for Community Living told “The Globe and Mail” that housing is one of the largest issues for individuals with intellectual disabilities and their families. In Ontario alone,      12 000 people with intellectual disabilities are waiting for residential placements. Some have waited for decades, as their parents have aged and become less and less able to care for them.

Ontario put 1.7 billion dollars in the last year into developmental services and residential placements, but the  government throwing more and more money at the problem may not necessarily solve it, “The Globe and Mail” reported.

http://www.theglobeandmail.com/news/national/for-those-with-intellectual-disabilities-a-decades-long-wait-for-a-home-and-care/article2397837/page1/

I Heart Closing Institutions!

For the record, I’m totally in favour of closing the institutions. Not just because they’ve got a horrific history of abuse and rights violations for the residents, but because by their very nature they put up so many barriers to having the residents participate fully in the community.  For example, when you’ve got a forty people in a building who want to go to church, doesn’t it make more sense to bring in a priest to do a service than to arrange the transportation, staff, etc. that would be required to get forty people to a church service?

I learned in school that it’s cheaper for the government to operate community homes in towns and cities than it is to operate institutions. Where is the money going from the completely closing Ontario’s institutions? Some of it came with the people who left the institutions, of course – and, from I’ve seen in my community of the people who’ve come to live here as the institutions were closed, was put to good use – but I think I assumed that closing the institutions would leave the sector with funding above and beyond what came with the individuals, so that  agencies could explore more community-based residential options.

Not Necessarily Group Homes, By The Way

Other residential options have proven successful, even for people with people with disabilities that we’d have traditionally thought too severe to allow the person to have his or her needs met in a community setting, such as these Ontario programs:

  • Assisted Living (living in a facility, but independently in  a room or small apartment, with whatever access to support the person and facility agree upon).
  • Enhanced Supported Independent Living (living with roommates in a house or apartment with 24-hour access to staff).
  • Supported Independent Living (living independently with mutually agreed-upon check-ins with staff when support is needed)
  • Family Share (Paying rent to live with a family that’s agreed to assist with support needs. Not a foster home environment)

Like I said, I remember hoping that there would be some more money for programs like these once the institutions closed. I also remember saying to someone, as the closure dates for the last institutions got closer, “I think it’s a great thing, but I hope we’re ready. I hope there are enough resources to go around.”

Bring In Some New Ideas!

I think that it’s a great (and necessary) thing that the non-profit sector is starting to develop ways of helping families to maximize their small amounts of  government funding to develop housing arrangements (and support arrangements in general). It represents a shift in how people with disabilities, their caregivers, and their support people  define, fund and use  “supports” that’s long overdue. The journey may not always be comfortable, and will definitely push us into uncharted territory. But we owe it to the 73% of working-age adults with intellectual disabilities who are living in poverty, and the parents well past retirement age who can no longer handle the needs of adult children with intellectual disabilities but must continue because there’s no other choice, to explore all the options.

More about this next week, when I review Donna Thomson’s book, “The Four Walls of My Freedom”.

Comments are closed

Celebrating Developmental Disabilities Month with Inspirational Stories

developmental disabilities month

What makes a home?

Developmental Disabilities Month: What is “Worth” Celebrating?

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

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

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

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

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

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

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

Familiar Stories

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

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

Celebrating Their Success

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

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

Celebrate *All* Achievements During Developmental Disabilities Month

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

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

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

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

 

Comments are closed

Involuntary Sterilization: Never Again

Several feminist bloggers have recently written about a story out of Tanzania involving the involuntary sterilization of a woman with several children.  As an American doctors helped her to deliver another child, there was a problem with the epidural injection, and the woman stopped

sterilization

How much is the option to have a child worth to you? How would you feel if someone forcibly took it away?

breathing. The American doctor did chest compressions to save her life. Another doctor performed a tubal ligation, saying, “I think she does not need another baby after this.” The American doctor later called the second doctor’s actions “heroic”

Not Acceptable

When the story broke on the “Femnomics” blog, he defended his stance on the second doctor’s actions by saying that it had to do with realities of life in remote parts of the world and that the sterilization was done with the risks in mind of what could happen if the woman got  pregnant again. But all I could think about was large group of women who were sterilized “for their own good”.

(Read the whole story on the Tanzania sterilization here, plus the American doctor’s defense of his actions, here: http://femonomics.blogspot.com/2011/11/involuntary-sterilization-cowboy.html)

Involuntary Sterilization in North American News

Meanwhile, North Carolina is currently trying to decide how much monetary compensation is owed to the 7600 people that its Eugenics Boards declared should be sterilized involuntarily between 1933 and 1977. According to a recent New York Times articles (http://www.nytimes.com/2011/12/10/us/redress-weighed-for-forced-sterilizations-in-north-carolina.html?_r=2&pagewanted=2&seid=auto&smid=tw-nytimes), 31 states had such eugenics programs. They were  “an experiment in genetic engineering once considered a legitimate way to keep welfare rolls small, stop poverty and improve the gene pool.” The “feeble-minded”, or people with intellectual disabilities or mental conditions, were often targets.

Not that America has the monopoly on the this. Forced sterilization was widespread in Canadian institutions for decades.  Even after the eugenics argument had fallen from favour, sterilization for women was still favoured as a way to them and the women who support them handle menstruation easily, as birth control, and as a way to protect them from abuse (see http://www.wwda.org.au/steril2.htm for a discussion of this).

Not Enough

North Carolina is currently proposing that the each person that was forcibly sterilized be given $20 000. I don’t think it’ll surprise anyone where I stand on this. There’s a scene in the film “Erin Brockovitch”, which (in case there’s anyone left out there who hasn’t seen it), deals with a lawsuit over a town’s water that’s got a cancer-causing compound in it, courtesy of a very large company. When the lawyers are trying to hammer out a settlement for each citizen that’s been affected, Erin says, (and I’m paraphrasing), “I’d like you to consider what your kidneys mean to you…or your ovaries…or your kid’s health…and times that by a million…and then come back with an offer. Anything else is insulting.”

I think that’s the kind of consideration that’s needed here. These people need to go home and look at their kids’ baby pictures, and think about how they would feel if the choice to mother or father that child was taken away from them without their consent (and quite possibly even their knowledge). And think about just what that sterilization was intended to do. And multiply whatever number they come up by another, substantial number. Then they might be getting close to a reasonable settlement.

And put the laws in place so that this never happens to anyone else again.

Anything else is insulting.

 

 

 

Comments are closed

Another Way of Looking at Group Home Closures

Group homes for adults with intellectual disabilities are closing across Canada and the group homesUnited States as a cost-cutting measure for agencies. For some families, losing group home support has already thrown them into a caregiving crisis as they adjust to having a family member who previously lived in a group home at home. But some of these crises are also opportunities for individuals, and families and agencies need to fight to make sure that governments see that and provide adequate support for individuals who have moved into other living arrangements. Because it was the assumption that people with intellectual disabilities couldn’t live in community settings that left them in institutions for so long, and we all know how wrong that assumption was.

Group Homes: Little Institutions

It wasn’t until I actually got some experience in a group setting myself through school that I realized how close they were, with no intention from staff or agency to them being that way, to little institutions themselves. When one or two staff is responsible for five or six people on a shift, there’s no way, in what each resident is supposed to consider his or her own home but has been declared to need staff assistance or supervision, lives on the agency’s schedule and the needs of the house. Dinner is what the staff makes and when the staff makes it. Bedtime is when staff says it is. Outings are when staff has the time. And, as we’ve seen in the recent investigations of the New York State group homes, it’s easy for abuse to go on in these environments.

But What to Do?

I’m not trying in any way to suggest that it’s easy to look after an adult child or sibling with intellectual disabilities full-time at home. There are issues involved with this: supervision (particularly when safety is an issue), care, and helping the individual to construct a meaningful day. But I think we need to ask ourselves, not just because group homes are closing more and more but because sometimes we make an assumption that a group is what the person needs when it may not be…is a group home the only option? Is there another living setting that could work?

For example, if the person doesn’t want to live at home but doesn’t quite have the skills to live alone yet, is there another family that they could pay room and board with, plus a little extra for some support with things that they find difficult to do (laundry or bill paying, etc.) Some agencies help families to set up placements like this.

Or if the person is living at home, what community supports are there to assist with caregiving? Some that may be of help are:

- nursing/supportive housing programs
- day support programs
- adult respite programs
- support workers
- informal support networks such as family and friends

Government funding for these sorts of things is unfortunately low right now right (at least in Canada. It’s a time to be creative, to network with other families, and to pool funding when possible to get the most out of supports. And a time to let your government know that if it expects you to have an individual in your family with a disability of any kind live at home with you, you need the support to make that happen.

The most important part of all of this is our attitude toward this. We can choose to look at people with intellectual disabilities having even closer ties to the community than group homes can give as a burden, or as something worth working toward. I told the teens with which I worked, “Assume the resources are there and that we just have to find them.” I’d rather look at the group home challenge this way, and hope that other agencies will as well as they plan to move people out of the group homes that are closing.

And, of course, that we’ll all continue to advocate for as much support for families as possible.

Comments are closed

Grateful to Be Canadian – Redux

I didn’t want to something like this so close to “I’m Afraid of Americans”, but I gave myself a scare

intellectual disabilities

copyright FreeFoto.com

the other night.

I knew as I switched to CNN on Monday night that my decision to watch the Republican Presidential Debate was likely against my better judgement.  I’d like to thank Michelle Bachmann and Ron Paul for confirming my suspicions.

Stick to the Facts, Michelle

To be fair to Michelle Bachmann, I don’t recall her actually suggesting, as she raked Ron Perry over the coals for his decision to have the HPV vaccine Gardisil administered in schools, that said vaccine causes intellectual disabilities. She has since taken it upon herself since the debate, in less-than-eloquent fashion.

Michelle Bachmann on Gardisil and “mental retardation”

 

Bachmann’s claims have caused quite a stir in both the medical and disabilities community, both of whom seem to agree that she is fear-mongering.

http://www.disabilityscoop.com/2011/09/13/bachmann-creates-stir/13940/

 

However, Ron Paul gets the award for making me get the closest to throwing something at the television set. As it was, I used some, uh, very unladylike language.

“Ron Paul drives me crazy. Half of what he says is brilliant. And then this happens:

Thank you, Danine Spencer, for summing it all up in this tweet.

I’m forever getting sucked into Ron Paul’s trap. He sounds sane compared to the rest of them for the first part of whatever interview/debate I’m watching. Then he just goes off the rails into this “WTF are you thinking??” stuff that makes me despair.

Danine was referring to this:

http://videocafe.crooksandliars.com/karoli/tea-party-audience-cheers-idea-leaving-sick

(Jon Stewart hoped that the people who cheered for the idea of leaving the sick man to die might have missed the fact that Paul actually said “No” when asked if he thought that should happen. I’ll leave it to you to watch the clip and decide what you think).

And here’s my point.

Proud to be “The Other” for People that Need It”

Ron Paul said that back when he was practicing medicine, churches, neighbours and friends took care of people who were sick and they didn’t have to turn people away from hospitals, but that we’ve forgotten this idea.

I’ve never worked in a hospital, but I’ve worked with agencies that have taken on the roles that churches, neighbours or friends would have played in the lives of people with developmental disabilities. I’ve often thought about how social services sometimes, in that caregiving role, become the “family” for people that have no family.

But for many of the people that I’ve worked with, they’ve never known anything *but* a family of caregivers, simply because they were institutionalized at a very young age. They had little, if any, contact with their families. They weren’t allowed to make community connections through places like church, or to makes friends outside of the institution. And then, when the institutions started to close, they were sent to communities where they knew no one.

Ron Paul might look down on Canada because he perceives us to be a socialist/welfare state. But my illustration is just a simple one of how just expecting churches/family/neighbours to meet everyone’s needs is terribly simplistic and simply doesn’t work. Reducing government agency supports to increase a person’s independence, when it becomes feasible and just generally healthy for the person, is a worthy goal – when there are natural supports to take over.  Not the other way around. And if that makes me a socialist, so be it.

So there, Ron Paul. Socialist and proud to live in a nation that values taking care of people that don’t have the means to take of themselves or people to help them.

(And Michelle Bachmann. I suggest that you assume that you voters are capable of doing basic research before you start tossing the anti-vaccine rhetoric around.)

Last post on American politics for a while. I promise. :)

 

Comments are closed

The Bravest People I Know

Two things you might want to know about me: One, I often have trouble sleeping, which is why my blog posts usually get published at odd times like one or two am. Two, I hate rats. I know that they’re smart and they don’t carry diseases anymore. But I don’t like them. They make me very uncomfortable.

Far, Far Too Many Rats

So I was surprised that I could get through a rerun of “Hoarders”, airing in the wee hours of the morning when there’s very little else on, that involved removing upwards of 2000 large rats from a house. Normally I’d have run screeching for the remote control as soon the first rat hit the screen. But the story was compelling enough to keep me watching.

The therapist working with the man who lived in the house with the rats said that he was using them, as hoarders apparently do, to avoid dealing with difficult emotions – in his case, unresolved grief from the death of someone close to him (his wife, I believe; I missed the first few minutes of the show). The rats had literally become like family to him. He could identify ones that were special to him, and was actually currently grieving the loss of one that he identified as the likely the mother of a great deal of them. When the therapist talked about the prospect of Animal Rescue taking the rats away, he cried openly.

But he’d made a commitment to have the rats removed, taken to temporary shelters, and then distributed to pet stores because he said he knew that they would have a better life that way. And while the process of seeing them put in containers and, eventually, driven away in a moving truck was obviously incredibly painful for him, he kept coming back to that conviction, even after the official “clean-up” was over and he was finding rats that they’d missed, that he removed himself.

At the end of it, as they showed him crying, watching the truck pull away, I thought, “How brave…to give up something you love that much, when you know it’s going to cause such heartache…because you know there’s a better life for it out there.”

I don’t like rats any more than I did…but I was really touched.

And I felt…feel…really privileged, because I know it’s not the first time I’ve seen bravery like this.

Intellectual Disabilities and the Bravest People I Know

I’ve worked with many youth (kids, really, although they’re legally adults or close to adults) who, though their intellectual disabilities give them much less capacity than I had at their age to truly understand complex situations, have had to make decisions that will affect their adult lives for years to come. Most of them had family support, but some of them didn’t; some of them had support from family friends or other adults, but a couple were really on their own. Together we went down their “Preparation for Adulthood” checklist: Are your funding applications done? Do you have a doctor? Where do you want to live?

I watched these teens take huge steps, terrified, sometimes only meeting with new support people on the strength of me or another trusted person saying, “This might be something that you want to try; if you don’t like him/her, you don’t have to continue.” And it’s truly amazing when these young people reach a point where they’ve decided, “Yes, I want to change this about my life, so I will try,” despite intellectual disabilities and anxiety about trying something new.

These youth were the more “high-functioning” of the ones with intellectual disabilities that I’ve worked with but they still faced significant cognitive (and often social) challenges. I, an Honours Students for my whole time in high school, couldn’t have done that stuff for myself at 17 or 18. But some of these kids with intellectual disabilities never had a choice. Perhaps that’s why every time one of them met one of these challenges that gets thrown at them, my heart just sang.

I really do consider some of them to be some of the bravest people I know. (I haven’t even gotten into the older adults with intellectual disabilitiess, the ones that were institutionalized practically from birth and endured injustices that I don’t even want to imagine, only to be relocated to communities where they knew no one them once the institutions started to close. These ladies and gentleman also amaze me.)

It’s About the People

So that’s why several of the teens with intellectual disabilities that I’ve worked with came to mind as I watched this man on “Hoarders” hold it together for most of the screen time at least while he lived through two of what were probably the most difficult days of his life. It takes an incredible amount of courage to voluntarily stare your worst fears in the face, and I can’t get over how many times I saw the kids with intellectual disabilities I worked with do it. It humbles me. It makes me glad I chose the work that I do. It’s why, no matter what job I do…I’ll never stop doing work with people with intellectual disabilities in some capacity, even if it’s just volunteer.

I would just miss the people too much.

Comments are closed

Stop Copying Plugin made by VLC Media Player