I had a phone call a couple of weeks ago from a producer (Brenda Finley) with Bell Media. She had been referred to me by a social activist that I have a lot of respect for, Velvet Martin. She asked me if I would be interested in joining a panel discussion on Alberta Prime Time to discuss the issues faced by a parent with a disability.
We spoke for about twenty minutes exchanging information and doing a cursory overview of her expectations for the panel discussion. She was very interested in getting feedback from a parent with a disability regarding any types of support programs that may have been available for me to access if required. She had indicated that there would be two or three other panel members and that she was also trying to get a government spokesperson. What I was thinking as we talk was “What services” which I didn’t voice at the time but I did agree to participate.
Since the show was being broadcast from their Edmonton studio a cameraman came to my home with his equipment and a set of questions. The filming would later be edited to make it appear that I was answering a few questions posed by the host. The cameraman was at my place for just under two hours and we probably shot fifteen to twenty minutes of tape. I knew the segment was only thirteen to fifteen minutes long and I wasn’t expecting a lot of face time. I was more excited over some of the issues that were discussed on the phone. The most importance was the acknowledgement of the intimidation factor many parents with disabilities face. That was the issue I wanted to focus on.
Anybody who knows me personally knows I don’t intimidate easily. However I do know many parents with disabilities that have had to face quiet intimidation when they have looked for some service that may help around the house. For instances there is an Alberta program were some house keeping services can be made available (up to 12 hours per month) for those with the physical needs. I have witnessed a government caseworker tell an individual requesting that service, “If it is too difficult to parent we could always look at foster care for your child”. That one statement has kept more parents with disabilities from asking for any type of support than I care to admit. That was not an isolated incidence otherwise I wouldn’t be getting as many requests for advocacy service as I get.
So this past Monday I sat down to watch this particular edition of Alberta Prime Time. The minute I saw the make-up of the panel I knew the conversation was going to go in a very different direction. Like any segment of society there is fragmentation among those with disabilities. Bruce Uditsky, who has been the face of the Alberta Association for Community Living for over twenty years, was one of the panelists in the studio. The Alberta Association for Community Living is primarily focused on developmental disabilities. Comparing parenting supports for the developmentally disabled parent to that of a parent in a wheelchair is like trying to order Chinese food using a pizza menu.
Now this is not intended to denigrate anyone with a developmental or cognitive disability but there is a world of functioning difference between the needs of these groups. Contrary to what many people in the general public think all disabilities cannot dealt with the same way. Just because you put a ramp into the local library does not mean it is accessible. Anybody with a visual impairment would have issues but based on policy (building code) the library is now accessible because they put in a ramp. It is the overly simplistic approach that contributes to systemic barriers and those are the ones that need to change.
However that is the essence of most programming for members of the community with a disability. Not only do different types of disabilities need to be dealt with differently, there also has to be some flexibility for the individual with the disability. We don’t need to be challenged with support programs that are defined by policy statements designed for gatekeepers. My prime example of when policy overrides common sense is the policy around the disabled parking placards. I had polio in 1953 and the results of that are never going to leave me. However every five years I have to go back to my doctor (taking up valuable health care time), get another letter from him stating I am disabled (at a cost of $50 for the non-medical matter related document) and then go get the parking placard renewed. I have come to accept the fact that I will always live with the results of my polio so when will those supplying certain services come to accept it as well. Anyway I realized the moment the program started that there just wouldn’t be enough time in a fifteen minute segment to do justice to the complicated nature of these issues.
After watching the show I came to the conclusion it had more to do with directing a bigger share of limited community resources to those parents with some form of developmental disability with some onsite effective parenting staffing resources. Again that type of support is very different than me asking for some support in shoveling snow or paying someone to teach my child to skate, as examples. After watching the show I was left with the feeling that all that was really demonstrated was how fragmented the disabled community is.
Just one man’s opinion.