“The bond that links your true family is not one of blood, but of respect and joy in each other’s life” – Richard Bach
It is one of those days and the frequency is increasing. I have been experiencing a new sensation that can best be described as a hive of bee’s crawling over my legs collecting pollen. The sensation is not of stinking in a painful way but annoying in that way the last moments of the freezing leaving your jaw causes following your dental visit. Between that and the grey weather outside this makes for a good writing day.
I received an article in my news alerts a couple of days ago which was very timely. It was from an Ottawa news source but hit on a topic I had been discussing Saturday evening with a friend, what is family. I think the importance of family is directly proportional to the type of disability you have grown up with.
If you have the ability to self-determine and manage your own affairs you can get by with less family involvement. Persons like myself or Glenda Hyatt are very capable of fighting for our needs, even the ones we shouldn’t have to. We have become use to a world where we have to take certain positions or stances that require a level of cognitive sustenance lacking in many other types of disabilities. The benefit of family support is nice but we can live without it if we have to.
If you live with a disorder that impairs your ability to self-determine the importance of a family cannot be understated. An aging population with developmental factors are dependent on family to compensate for the lack of ability to self-determine. The aging parent care-givers traditionally handle this. Those same families are also recognizing the erosion or privatization of the services they fought so hard for. Who will manage their child’s care once they are gone?
In the 70’s and 80’s there was a massive push by governments to cut back institutional living and involve families in home communities. This decentralization of large institutional care centres to a community based approach put the responsibility on the family. I know too many parents from my mother’s generation who have been the primary care-giver or service supervisor for their disabled child. With that said that “child” is now close to or in their 60’s themselves and that family involvement has been a life time of service.
The conversation I had on Saturday evening revolved around “what is a family”? I have wrestled with that concepts for most of my life. I did a Google “What is family” search and received over 370 million responses, way too many for my purposes so I quickly scanned twenty of the best rated ones to see if I could see a pattern.
One of the consistent themes used in describing a family were the words “home”, “house” or “place of residence”. Interestingly the idea of “blood relative” was absence but the importance of “mutual respect and support” was used a lot. That I could relate to.
My childhood place of residence was the Alberta Children’s Hospital, that’s how polio was dealt with in the 50’s and 60’s. Institutional living was much more acceptable in that time so the foundations of family was very different for many polio survivors. It was easier to conduct life events like school, community activities (yes they had their own Scout, Cubs, Guides and Brownie packs), movie nights, teen dances, etc in the control environment of the hospital. The hospital was home.
We also underwent surgery on a regular basis to combat some of the effects of polio. Ideas like accessibility and inclusion really didn’t exist in those times. To me that was normal life and my “family” were the other polio survivors who shared my “home”.
By the time I was sixteen years old I had spend close to eight years in the Children’s Hospital so my exposure to the concept of family is a little skewed. It doesn’t exactly fit the mold for the traditional family make-up. It wasn’t uncommon to go to my parents home for the summer and even then most of the polio kids went to a Kinsman or Kiwanis camp somewhere for a week.
I have five sibling and as I became an unruly teenager my summer excursions left me feeling more like a foster kid coming to visit. I was not an easy kid. I had a chip on my shoulder which caused a lot of anguish for people close to me. When I was outside the confines of the hospital I was a terror and, in retrospect, never really knew how to behave.
Society in general had little expectations for persons with disabilities so I imagine they were just as confused. Society didn’t have the rules and regulations that exist today but I do know that as the end of August was coming upon us I would look forward to getting back to the safety of the hospital. That environment wasn’t as confusing.
I wish I had the benefit of the insight I now enjoy when I was 14. Aging can be anxiety stemming when you have the ability to self-determine but at least I have the awareness to manage any care I may need, too many don’t. It must be devastatingly so for those parents who have dedicated their lives to keeping some type of dignity in their 60 year old child’s life…my family are those close friends whom I share a mutual respect and admiration for.