Understanding long-term disabilities

The disability rights movement began in North America in the 1960s. This movement gave myself and others like me the idea that it was possible to live on our own.

Having grown up in the province of Ontario, I’m always astounded how much doctors and nurses who work in general hospitals often do not know about people who have long-term disabilities.

People with long-term disabilities are now living in independent housing communities. Some of those people are gainfully employed within their community, while others are contributing by volunteering. Those in independent housing communities are living on their own in self-contained apartments and have employed staff to help them during their lives at home or at their workplace. The employed staff is paid for by the Ministry of Health’s long-term care disability services.  However, these staff members are not around twenty-four seven acting as babysitters. They are called by the client only when they need assistance.

The term long-term disability encompasses a lot of people. These people may have been born with conditions such as cerebral palsy and spina bifida, or some people are newly disabled, having been in a car accident and ended up paraplegic or quadriplegic. The movement in the 1960s recognized that with assistance, there was no reason why people with long-term disabilities could not live independent lives. Some people do choose to live in long-term care facilities, but it is the client’s personal choice as to whether they do so or not.

In the mid to late 1960s, men and women were returning home from Vietnam and some of these people were returning with long-term or permanent disabling conditions. These people knew that they did not want to live their lives in hospitals or long-term care facilities. Some of these people wanted to find meaningful employment, get married, and start families in spite of their disabling conditions. The amount of disabled veterans returning pushed for wheelchair accessible homes and apartment buildings. These returning veterans also may have needed caregivers from the communities that they lived in.

Why are some medical professionals ill-informed about the independent living movement for disabled people? According to Statistics Canada, “more than 1.85 million Ontarians have some kind of disability – that’s one in seven.” That is a large portion of the population and through my own experience, at times the experience can be very negative.

During one of my most recent visits to a general hospital wound clinic, the doctor, instead of speaking to me, chose to speak to my friend who came to the appointment with me, as if I were not even present in the room. I spoke to the doctor and stated, “Please speak to me since I am the person with the wound on her foot.”

This incident, sadly, is not the first time I experienced such behaviour from a doctor or medical professional during my adult life as a disabled person. I feel that such behaviour is terribly rude, disrespectful and makes me question how much training doctors and other medical professionals receive regarding treating disabled people.

However, I have had positive experiences with medical professionals during my treatment as a disabled person. In 1988 I needed to have an old hip surgery redone because I had been experiencing pain in my lower back and in addition, my knees were knocking together. The nurses and caregivers at that long-term care wing, their care and compassion towards their patients was exceptional and in addition, they appeared to work well with their co-workers.

As a preteen, I spent a large part of my life with my neighbours including my family doctor – their family lived down the street from ours. During this particular time period, I got to know my doctor’s family so well he treated me as if I were one of his daughters.

Throughout all my experiences, both good and bad, feelings of uncertainty still remain whenever I meet a new medical professional.  How can the medical professionals have a more open and compassionate attitude towards people with long-term disabilities? What can we do as a culture to get the overall society in general to have a better understanding of people with long-term disabilities as well?

We have come a long way, but still have a long way to go with regards to our understanding of people with long-term disabilities.

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