I am a parent who identifies more with the term "special needs" than the more inclusive "disability or disease".
Special seems like the perfect word to sum Isla up. As long as its not used in a derogatory way I have no problem with it. Personally I have always associated "disability" with a physical impairment and "disease" as a type of illness.
Why it matters?
On an almost daily basis I need to describe or explain a behaviour, an exception that needs to be made or a justification. I will just say she has "special needs" which (to me) encompasses it all....the autism the chromosome disorder, the epilepsy, the dyspraxia and the learning difficulties.
To me "special" is a positive, uplifting word that makes Isla unique.
Her specialness should be celebrated, admired and cherished. Her special needs are a positive thing that sets her apart from everyone else.
She doesn't need to conform to fit in and should be proud of who she is. BUT apparently according to the world of disability this is not the correct terminology to be using.
There are some adults living with disability, including those with autism, that feel that the term "special needs" is outdated and disrespectful.
They do not identify with being special at all and they see themselves as no different. They just want to be accepted as having a disability and have opportunities just like everybody else.
They feel that the word "special needs" is a euphemism created because the original word has negative connotations. A bit like you might say you are going to "powder your nose" instead of going to the toilet or someone has "passed away" instead of saying they have died.
Special needs is considered as offensive as the word retarded or handicapped (which are in fact offensive just to confuse things!).
However, when I look "disability" up it doesn't say "has an ability to do something in another way".
In the Oxford Dictionary it says "A physical or mental condition that limits a person's movements, senses, or activities" and "a disadvantage or handicap, especially one imposed or recognised by the law"
I think every family or individual should use the terminology that feels right to them.
When Isla is an adult she may identify with having a disability instead of referring to herself having special needs and that is fine too. For now even if we are sugar coating the dictionary definition above to make ourselves feel better that's okay too.
Our approach of making Isla feel "special" growing up has worked so far, raises her self esteem and helps lower her anxiety.
It provides a positive explanation to her of why she is different to others. Long may to continue.