Perception of Yourself & Others With A Disability

What is it you see in the mirror?

My vacation this summer was an amazing experience. For the first time…well ever…I had my girls alone at the cottage. It is boat access only no phone other than a cell. 911 would be 45 minutes – on a good day. I felt well enough to handle it, so off we went.

My youngest has just taken her lifejacket off in the deep end of our pool at home. I quote “I have moved on with my life, Mummy”. Really? The Bay waters are dark, cold and risky, so all children must wear lifejackets when swimming. The first couple of days my husband was there, the girls swam a little, but were having a bit of trouble getting used to the water.

In fact, my baby (7 years) screamed in such panic I freaked. She didn’t realize that the black squiggly thing beside her was a pipe taking water up to the cottage, not a snake. Upon my husbands’ departure, the girls seemed less enthused about swimming. I kept asking them but they said “No Thanks Mummy”.

My husband arrived with our nephew after 4 days. My nephew was in the water in seconds. The girls followed suit. We couldn’t get them out. I kept asking them “Why didn’t you want to swim with Mummy?” After some time my youngest said “I wanted Daddy here because I didn’t think you could save me if I was drowinding.” I felt my heart shatter in a thousand pieces.

I was a fish growing up; on swim teams until I was 16, lifeguard, swimming instructor and swam everywhere and anywhere for most of my life. I have jumped off Bluffs, snorkeled in the Caribbean (now I do have a fear of fish – yes it is true – but I still did it). I love the water.

My medication is administered through a patch; these have trouble adhering to my skin on the best of days. Add a shower, bath or pool to that mix and it causes additional adhesion issues. (Please note, I do shower and bathe). As cold water can put my muscles into spasm, I have to choose very hot sunny days and ease my way slowly into the water. Finally, it is prudent to have a lifeguard for me as well, disability or no.

I explained this to my daughter and added; “Darling, pain or no pain, there is nothing that would stop me from saving you. Mothers have crazy amounts of strength when it comes to their babies”. I don’t know if this changed her mind. She doesn’t know me prior to the disability; the weakness is all she knows.

Recently, I spoke with a lovely woman who teaches physiotherapy at an American University. She predominantly deals with Geriatric patients. A female patient explained to her; She wakes up in the morning and goes about her business, feeling like her 40 something year old self. When she looks in the mirror, the 80-year-old reflection stares back at her. People treat her like a child or speak to her more slowly or loudly and essentially, act like she is a bit dotty. It is a difficult reconciliation to make, the person she feels like or the person everyone else sees. 

My grandfather is about to turn 90. Even though he does look a little older, the inside he is still the same firecracker he was at 50. He only stopped skiing last year. I wonder what people who have never met him before think? Do they speak slowly to him? Do they think he is dotty? I know he is not, but what do others see? I am quite sure he still sees himself the Twentysomething RAF pilot in WWII, only a little wiser.

People who have Disfigurements, Chronic Illnesses, Disabilities and Burns have to battle the internal struggles that are many and varied. However, dealing with the general public adds a different dimension to the struggle. When disabled people transition into the emotional acceptance of their lives, that doesn’t mean they have given up who they were. Maybe it is replaced with something different, but that doesn’t mean less than.

In the interest of expanding my knowledge and understanding of how people reconcile how they feel on the inside to how they look on the outside I have created a questionnaire. I welcome ANYONE to fill this out. Once I receive enough submissions I will analyze the results and present them. The information will be kept confidential. It will not be shared, sold, distributed or released. It will be for the express use of this study. This questionnaire is not just for those with a physical/mental/emotional challenge, it is for everyone.

We are all aging (yes, you Thirtysomethings count too) and it is a timeless struggle. We all see the disabled every day, how do we treat them? How do we, the disabled, feel about ourselves and how we are perceived? Getting some type of answer might be helpful. I know that many of my Cyber Pain Friends have vented about how their friends “pre-disability” have disappeared. How their friends just don’t “get it” and how it affects the patients’ ability to cope with their lives.

So, please pass this survey along and see what we can find out.


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