Positive attitudes to deafness and disability

Disabled parent, Jill Wolfarth from Peterborough, UK, shares her experience of parenting a Deaf child.

Four years before the birth of my first son I tried to enrol on a British Sign Language course because part of my work as an Access Officer entailed working with the Deaf community. Just before the course started a message was relayed to me to the effect that the tutor would not be able to cope with teaching a one-armed person and that Deaf people would not understand my signing anyway. Well, that certainly put me in my place.

In 1994 I found that I was pregnant. My husband and I were over the moon. Regarding myself as a Disability Rights supporter I refused all the tests for ‘abnormalities as they are so delicately called. My first son, Keir, was born in 1995. Apart from having difficulties with some aspects of childcare like cutting toenails (impossible), bathing babies (impossible) and fastening the straps on baby car seats (impossible), I made a pretty damn fine first-time mother.

“How would you cope with a disabled child?”

In 1997 I found I was pregnant again. Once more I declined the battery of tests offered to pregnant women. This time the consultant looked worried, he wasn’t happy with my age (37) or the fact that I was disabled. “How would you cope with a disabled child?” he asked. I walked out.

Calum was born in 1998. What an angel! He never cried! He would spend hours looking at branches waving in the wind. He invented his own entertainment. He was profoundly Deaf, and we had absolutely no idea until he was diagnosed at 11 months old. Deaf. My son was Deaf - I had to learn sign language. Fortunately we were now living in Nottingham and the local Deaf tutors saw no problem with my impairment.

Our children’s rights

Let me tell you why it is a wonderful thing for Deaf and disabled children to have Deaf or disabled parents— because we will fight for the right of our children not to have unnecessary surgical procedures to make them more ‘normal’ and because we can provide them with strong role models in the Deaf and disabled community. I still remember the day when the ENT consultant shouted at me for being an irresponsible mother for not allowing Calum to be cochlear implanted. The consultant presented deafness as a tragedy. I replied: “My son is perfect, he just happens to be Deaf”.

Let me tell you why it is also a really and truly awful thing to be a disabled mother of a Deaf child — because your non-disabled family are grieving and cannot understand why you are not upset. Looking back, I realise that it didn’t even occur to me that my husband might be wishing that Calum wasn’t Deaf. He left seven months after Calum’s diagnosis. During the same period the arthritis in my remaining hand got so bad that I could hardly move my thumb. My signing was so poor that Calum didn’t even bother to look at my hand. It was at this point that I decided I could either go out to work again and employ a Deaf, signing nanny or stay with the children and just muddle through. I chose the latter course. I have to say that things got a lot easier when Calum started playgroup and was provided with a one-to-one signer (with two arms!).

Calum is now five. I am no longer seen as an irresponsible mother by the medical profession for refusing to have Calum implanted. This is due, however, to the advent of digital hearing aids rather than to any acceptance of the social model of deafness by the medical establishment. Both Calum and Keir are happy, confident individuals with positive attitudes to deafness and disability.

By the time you read this I will have returned to work as an Access Officer on a part-time basis. I couldn’t have done it when the children were younger. Perhaps I should have - but I just didn’t want to.

First published in Disability, Pregnancy & Parenthood international, Issue 45, Winter 2003/4.

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