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Triston in Cape Town

Column 'I have been asked if I mourn the healthy, normal son that I could have had'

There is still the belief that having a disability means that you are only half the person that you could have been, that it is not ‘normal’ and should be ‘cured’, writes Hesline Crawford.

I WAS INTRODUCED to the world of disability twenty one years ago with the birth of my only son.

I used to look at him with strong emotions of love and fear, a mother’s fear of what would become of my child in a world equipped for the able-bodied.

I needn’t have worried. My son embraced life with all the challenges and obstacles life flung at him, and from time to time even surprised me. As he developed through life and reached his goals, I became less aware of his special needs and more aware of the impact that society has on a person with a disability.

Ignorance and inclusion

Attitudes, ignorance and inclusion are areas where I have witnessed changes over the last twenty one years. We appear to have come a long way from the days of referring to people with a disability as the ‘village idiot’, ‘slow’ or ‘retarded’.

There appears to be more emphasis on inclusion rather than segregation, which is largely due to the normalising of disability. Children with a disability are integrated into mainstream schools, while adults with a disability now live and work in the community.

Even though these transformations are taking place society still seems to struggle with the word ‘disability’ and what it represents.

There is still the belief that having a disability means that you are only half the person that you could have been, that it is not ‘normal’ and should be ‘cured’.

We strive for perfection

Over the years I have been asked if I mourn the healthy, normal son that I could have had. We strive for perfection and beauty in society, especially in a society dominated by social media. How can disability compete with this?

The only time we see actors with a disability is when the role requires or the film represents disability. Even then, the so called able-bodied actors play the role of the person with the disability and receive high praise for doing it so convincingly.

It was said to me recently, by a person who works in the area of disability, that it must be heart-breaking for parents with a child with an intellectual disability to not see their child develop in life. This assumption is a damaging and incorrect one, and one based on a belief which is shared by many.

Making assumptions

For example, while looking for a parking space near a restaurant on a night out, it was suggested by one of the passengers to park in a disabled spot, since ‘they’ will not all be out this time of night.

At a professional meeting a few years ago, social workers discussed a client and her son who had an intellectual disability. They referred to him as not being the ‘full shilling’.

It is negative, insensitive comments like these, that are so damaging to those with a disability.

Waiting rooms in doctors’ surgeries and hospitals are always interesting places. It was there that someone shouted across the room at me: ‘Is he sick on ya?’ I realised the question was directed at me. The other people in the waiting room stared at me as the question was repeated a second time.

Their disability makes them unique

A person with a disability is a human being first. Their disability is simply what makes them unique.

As humans we share certain similarities such as feelings, needs and goals and having a disability does not change this. As a society we have the ability to recognise that racial or gender segregation is wrong. Let’s avoid creating a ‘them’ and ‘us’ attitude when it comes to disability.

Hesline Crawford is the mother of a young adult with disabilities. Hesline was one of three mothers who established the Jonah Project (a school for children on the autistic spectrum). She studied Social Care in WIT and Trinity. She works as a job coach for people with disabilities in Waterford and is a member of the Anne Sullivan Advocacy Working Group.

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