I usually try to be polite and mature in my writings. I try to be as factual as I can and hopefully eliminate as much of my own bias as possible. Then there are days like today where I run across a story that just really pisses me off and I need to RANT. These types of stories are showing up with increasing frequency and they all have a related theme.
Over the years I have watched as “words” have been redefined simply by being used out of context. The context the word usage derived from may have changed altering the understanding of that word. Definitions from thirty years ago may no longer be valid and yet we continue to build a legislative framework on those words. I contributed fifty + years of my life to build an inclusive society and I know what the intent of all that work was. I can no longer sit here like a “politically correct puppy dog” simply because I may benefit from some of these programs while my history is erased.
RANT – A story came to me today about a mother in Smith Falls, Ontario. She has been tied up in the Human Rights process fighting for the rights of her son with Down Syndrome. I have included the link to the story but here’s the long and short of it. Her son is a 52 year old individual who has lived in the community most of his life. He receives a certain level of support in the community to sustain his independence.
I am guessing mom is in her seventies so not really the stress she needs in her “retirement years” (for the record for some parents of children with disabilities there is no such thing as retirement). Plus she was absorbing (and she admits a good bit of financial support from friends) that $1500/month additional cost that the government wouldn’t cover. The governments own standards stated the son could have a home visit from a nurse four (4) times a day but not the fifth time.
To screw around a family for something as simple as the difference of one visit pisses the hell out of me. A standard needs to be balanced with intent before being denied. Behind every standard is a “legislative intent“, people tend to forget that. A standard is simply a way to provide measurement or activity but intent is a way to adjust for circumstances. Over the years I have watched as “intent” slowly disappears from decision making. The intent behind home care for independent living is to allow people to stay in their community and that intent should hold some weight when determining needed hours of support. Continue reading “Pissed Me Off, Again”→
“Our dead are never dead to us, until we have forgotten them” – George Eliot
The passing of Kenny Baker caught my attention this weekend and created a tsunami of thought. Although I remember many of Kenny’s movies I also remember him as a voice that spoke for disability rights and acceptance. He may have made the character of R2D2 an icon however his voice as an activist was shattering barriers rather than star troopers. He was an important voice in a sea of marginalized people in a generation where the Vietnam protests overshadowed almost every social issue facing the world. People like Kenny paved the road for inclusion.
Kenny lived 81 years with hypopituitarism, the cause of his dwarfism. Forty years ago the idea of making it past 50 with this disorder was a challenge let alone 81 years. Today, thanks to the efforts of the likes of Kenny, people with disabilities are far out-living prior expectations. Death takes us all, you will be missed but your spirit and your contribution will live on through many of us.
Death is becoming much more prevalent in my life these days. Getting old has some of its own realizations and receiving more funerals invites than wedding invitations these days speaks to the demographics of my social circle.
A very close friend of mine lost his younger brother to cancer about a week ago. I’ve known Ken over 30 years but I didn’t really know his brother. I knew his brother was very ill and the family was making the best of the time left but I didn’t realize he had passed away until I found out quite accidentally (and embarrassingly). His brother was only 63 leaving his beloved wife and two adult children behind.
Ken and I keep regular contact however he’s in Calgary and I’m on the Island so we are not necessarily current on the day to day aspects of each others life. I happened to send him an e-mail containing a short joke about a fellow whose buddy had passed away and was speaking to him from the beyond. Ken, with his usual grace, got back to me commenting on the timeliness of the joke as he was busy composing the eulogy for his brothers service. Boy did I feel like a schmuck but I know Ken well enough to understand his comment was very genuine.
How someone deals with death varies greatly however the underlying theme is well entrenched in the death and dying process described by Elizabeth Kubler-Ross so I won’t bemoan it. I sat with enough grieving families and individuals in my years as a hospital emergency social worker to know everyone grieves differently. My job was to listen and provided comfort as needed. Continue reading “Let It Come”→
“It always seems impossible until it’s done” – Nelson Mandela
What does it mean when someone says “you’re talking to the choir”?. Lately when the conversation turns to access I get a lot of “it’s alright you are talking to the choir” comments until I ask them something like:
Me – “Okay where could I send a family who want their 17 year old son with Cerebral Palsy to learn to drive. They can’t find drivers program with a hand-control vehicle. Where would you suggest I send them?”
Choir – “Well I thought you were talking about access. Learning to drive has nothing to do with access”
Me – “I am talking access and it’s relationship to driving is access to service. The need to access service is the backbone of an inclusive community. Everything else, ramps, hand-controls, beeping crosswalks, etc are tools to meet an objective and that objective is access.”
Choir – “Oh I thought you meant getting those buildings ramped properly and some accessible housing.”
Me – “Well that’s part of access. I’m much more interested in accessing the services in the building. As an example, ramping a library makes little difference to a visually impaired persons access, so why do we consider it accessible once a ramp is there? A ramp is merely one tool that can be used for access but that tool isn’t the whole process. There is a wide range of life requirements to live independently and by recognizing access as an attitude it is much easier to plan for an inclusive community.”
Is that really talking to the choir? Access is a very complicated subject that has been watered down over the years by dividing the audience. To me access is a thought process and needs to be incorporated into every step of a process. Continue reading “Who Is the Choir?”→
“It’s not the dog in the fight, it’s the fight in the dog that counts”
In my last post I mention two stories that had caught my attention and went on to explain one of them. That was the story regarding the Quebec restaurant and the patron with a serious allergy situation. I touched on the history of inclusive advocacy, reflected on terminology and presented my case for shared responsibility.
The second story has been spurred on by a recent event but one that has become reflective of societal thinking. It’s a sensitive issue that pits various disability demographics against each other and that’s the topic of service dogs. I cannot stress enough on the difference between a “service” animal and a “comfort” animal.
The recent event involved meeting up with a longtime friend for lunch and a beer. Normally I wouldn’t reference his visual impairment because it has little to do with our friendship but is quite germane to the topic. He has a service dog (Dusty). I had called in advance to check on wheelchair accessibility and everything sounded fine except…the establishment didn’t understand that attending service animals are part of access.
After a brief discussion we entered and took a table. The owner (I’m assuming the owner although he never actually used that title) approached us to apologize for the confusion with Dusty. Now bare with me because this is my jaded side, his apology (appreciated) became a long story of justification. I’m more and more convinced that people have forgotten how to just say “sorry” and move on when an apology has been expressed. An extended narrative from basically a stranger is not required with an apology.
He did raise some very good points. He explained previous experiences where customers have shown up with “a dog in a vest” but no licence for a service dog. We discussed his knowledge base at running a restaurant, not a human rights office. He’s kept busy making sure restaurant standards, food prep, sanitation, occupational health and safety, blah, blah, blah are maintain. He runs an establishment where most animals are prohibited for food safety purposes so how is he to know which animal is which. Unfortunately he is right. A quick Google brought me over a million hits or I could order a service vest off of Amazon, no questions asked. It is easy to understand his frustration and confusion. He isn’t alone.
Service animal legislation tends to be provincial jurisdiction while what a service animal is happens to be defined in a number of pieces of national regulations. In other words what you think is a service animal may, in fact, be a “comfort” animal and that is a whole different can of worms. This is where conflict between disability demographics begins to raise its ugly head. Restaurants Canada provides a rudimentary Best Practices sheet on what kind of legislation directs treatment of service animals. Continue reading “Boundaries Keep Moving”→
Two stories grabbed my attention this week that I really need to speak out on. The first was that unfortunate event in that Quebec restaurant. Did the police go to far in arresting the server? Initially I would have said yes until after watching some Facebook chatter. I was also hearing from other disability activists looking for a point of view. These are peers, each with a minimum of 45 years experience living with a disability plus a long history of activism.
We have spend the better part of our life’s fighting for access based on the disabled profile of the day. However the face of disability looks very different today than it did in 1980. The complexity of disabilities has grown in the past 40 years and our thinking has been slow to catch up. In todays society we have to look at an inclusive community rather than just an accessible one.
The 70’s and 80’s set the table for “physical” access almost tying the concept of access to the build environment. Today we confuse an accessible community with an “inclusive” community. Two very different concepts requiring two different ways of thinking, access is about an “assumed” responsibility (building code as a concrete example) while inclusion requires a level of “shared” responsibility (which could be represented as the “intent” of the building code).
An inclusive society is about interdependence rather than independence. Inclusive thinking would require the server to maintain a level of responsibility in dealing with a customer who had explained a life threatening allergy. My experience has been if there are no consequences for the lack of responsibility than why should anyone ever have to be responsible.
The consequences for Simon involved three days in a coma and that was the result, in part, because someone ignored their responsibility in this little interaction. If a doctor had caused this there would have been consequences. If societal expectations are that an inattentive server can abandon their workplace responsibility but a doctor cannot then that is elitism not inclusion?
Today is just a rant to get something off my chest. Life can be a bitch to get some of this frustration out there when you have become like white noise to almost everyone around you. Something happened two days ago and it raises numerous flags for me.
We have #blacklivesmatter, we #bluelivesmatter, and even an #alllivesmatter but I am left with the impression following this incident that there is an underbelly of belief out there that some lives are more valuable than others. What am I ranting about, the planned, announced and completed murder of 19 disabled individuals, leaving 26 others injured and where is the outrage. The same outrage that created the movements mentioned at the beginning of this paragraph.
The perpetrator of this horrendous event had been in custody after submitting documentation that he could “obliterate 470 disabled people” to the police. He turned himself, an action I would interpret as a cry for help and they still choose to release him on March 2. So we now have disabled killing other disabled, in part, due to a disparity of service provision.
This is indicative of a societal thought process, “groupthink“. In some situations it can manifest itself through terrorism but it can also manifest itself as “disability erasure“. We begin to marginalized based on productivity and we do it to ourselves. Although some of my peers may deny it, the truth is approach a Paralympian and congratulate him on his efforts at the “special Olympics“. Two completely different events but one that inadvertently marginalizes the other.
And now we have done it again. If this had of been a facility for veterans there would be world-wide condemnation. But it wasn’t, it was an institute servicing persons with developmental disabilities. I don’t hear much indignation over this one and that just leads me to wonder how much we have segmented ourselves…
“The disabled of tomorrow will be those who lack access to technology today,” Terry Wiens 2001
Today was gorgeous and well worth a good wheel along the water front. Nanaimo’s 50th anniversary World Championship Bathtub race weekend was going on so the water front was very busy. While enjoying the sun I came across a gentleman using a Batec on his wheelchair and struck up a conversation. A Batec is a piece of equipment you can attach to your wheelchair and turn it in to a type of three wheel bike run by a rechargeable battery.
We sat in the sun chatting for a few minutes while he gave me the rundown on the Batec. This gentleman has only been wheelchair dependent for nine months, a newbie and is really just learning the ropes. He did have well developed arms and shoulders so we talked a bit about the long term effects of using shoulders as weight bearing joints. Shoulders weren’t really designed to work as ambulating appendages and this has to be planned for. He was quite happy to have the ability to use an electric drive to save on the wear and tear of his arms. What jumped out at me was the idea of improved access to beaches and forest pathways he spoke of. This tweaked my interest enough to do a bit of research on Batec once I got home.
I was aware of the equipment but had never seen more than a picture of them. An old friend of mine, Reg McClellan, had made me aware of them. An Ontario based medical equipment company Reg is involved with started bringing Batec into Canada. Reg and I were members of the Alberta Wheelchair Sports team over 40 years ago so he keeps me reasonably up to date on what is happening with new wheelchair gear. He tells me that to this day one of his favourite speaking engagement stories involved the two of us during the 1978 National Games held in Newfoundland. Since I helped create the experience but am unable to enjoy the luncheon I get current reports on new technological developments in the world of wheelchairs.
Besides the shared interest in wheelchair sports we also have a mutual interest in entrepreneurism. We went different directions when we left Alberta, Reg to Ontario and me to BC however social media reconnected us about fifteen years ago. The two of us are definitely not as active in wheelchair sports as we once were but we are still both active in entrepreneurship. Batec turns out to be an excellent example of what social entrepreneurism can accomplish. Continue reading “Social Entrepreneurism (Revision)”→