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About two years ago I was working on a voluntary project with some of my kids alongside other volunteers from various backgrounds and abilities. One of the volunteers we worked with was a man who I'll call Fred. He had been wheelchair-bound since he was a child with cerebral palsy and various other health issues. During the day we had many pleasant conversations about varying topics but one struck a chord and has stayed with me ever since.
At one point during one of our chats, we talked about my daughter Heni and I told him that she too was "handicapped". He remarked with quite some vehemence that He didn't like to be called Handicapped and that he preferred to use the term "disabled".
I remember telling him that I felt that "handicapped", if anything, was less of a negative term than "disabled" in my opinion. He then went on to tell me that it didn't matter what I felt about the word...it only really mattered what he felt because at the end of the day he was the one being called handicapped or disabled and he was the one who had to sit in a chair all the time... not me.
Picking Lavender at the Hitchin Lavender Fields |
As a parent of a handicapped /disabled child, it was quite an eye-opener for me. However, I also thought that it was really quite short-sighted of him to not understand it from the perspective of those people who are around him.
As a parent of a "handicapped" child, I feel every time my daughter suffers something, I do too. I feel her pain and I feel it excruciatingly. Every time she is in discomfort I am in discomfort too. It's not exactly the same I know, but watching others suffer can also create suffering in the ones who love and care for them.
All I wanted to relate to Fred was that the handicap or disability is not just experienced by one person and that person alone. It affects all those around them and who love them. He failed to appreciate that although I didn't have to go through exactly what Heni (or he) does, I and the rest of the family experience Heni's disability WITH her... and our lives are hugely affected by hers. In trying to explain how he felt with such passion he failed to understand how those around him may feel.
At the end of the day, after the project, I decided to look up the words "Handicap" and "disabled" to see if I could understand more of what he felt.
Handicap..... implied a set of circumstances that makes progress or success more difficult.
Disability... was the consequence of an impairment whether it be physical, cognitive, mental, sensory-emotional or developmental.
To me, it didn't really matter which word I used as I felt that (if we use the above definitions), we ALL have our trials and they are all fit to our backs and are "ours".
Everyone has some circumstances that make progress difficult... or have some form of level of impairment (sometimes that others can't see). People often don't see things like Autism, fear, rejection, depression, mental illness, loneliness, lack of confidence, abuse, carer burnout or other such things. Although we may not be in a wheelchair like Fred or my daughter we are all disabled or handicapped in some way shape or form.
Some disabilities/ handicaps are just more visible than others!
So at the end of the day, I left with a renewed appreciation for the hidden trials we all endure and a greater understanding of the definitions and labels we impose on others and on our selves...
So, as the picture at the top of the pages states..."Be kind, for everyone you meet is fighting a hard battle".
Jx
P.S. More on Carers and Carers health in future posts.....
P.P.S. I think there is only one exception to this....see "Parking in disabled spots!!"
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