Hydrocephalus Canada

"Living in the World of Shades of Grey"

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Christine Stapleford writes that people with hidden disabilities may not have all the physical problems, but they do face many of the same challenges. It's not as black and white as everyone thinks.

There are three different types of spina bifida and within each there is a wide range of physical functioning. While many people with spina bifida need mobility aids, many do not. The challenges faced by such people with hidden disabilities are unique. They often face the dilemma of waking up each morning not knowing what level of endurance, pain and strength they will have for that given day.

When I was a child and began to walk, there was a sense of relief with the thought that this would make my life easier. However, throughout my life my level of capability has been constantly questioned and is something I have had to address with friends, schoolmates, teachers, co-workers, extended family, and others. Inability to take part in certain gym classes and school trips due to the physical demands; prolonged absences from school because of hospitalizations and surgeries; and needing to use an accessible parking spot (with my permit) since I am unable to walk long distances has sometimes caused animosity and ostracism with my peers. It is these societal biases that I have found the most difficult to handle. People like me are often placed in a position where we are not accepted or understood by either the community of people who are "able-bodied" (since reality dictates that various accommodations may be necessary for us based on our level of physical functioning) or the community of people who have disabilities (since we do not appear to have a disability).

I am often placed in the position where I need to explain that I am aware of how having a disability can impact upon people. I too have some physical challenges, such as limited sensation in my feet and chronic headaches, that are not necessarily obvious to people but do affect the way that I conduct my life. When I explain that I have spina bifida and hydrocephalus to people, the response I often get is that I must have a "really mild type" of spina bifida (which is false) and for that I am lucky. I find this reaction upsetting, since it belittles my experience of having spina bifida - which is a large part of my life and the person who I have become. I have also been asked to prove that what I am saying is true. How can I do this and why should I have to?

Society's biases towards people with disabilities have begun to change, although it appears to be somewhat slower for people with hidden disabilities. Society needs to look beyond the obvious and become more aware that hidden disabilities can have far-reaching consequences. To facilitate this process, those of us with hidden disabilities need to work together with our families and communities to continue making our society more aware and accepting. It can happen.