Parenting with a disability

Parents, in general, often receive criticisms and judgements, but parents with disabilities face even more. Emma McKinney shares some personal experiences

 My husband, Vic, has level C3 – C5 quadriplegia, I am hearing impaired and we have two energetic young boys. Vic acquired his disability in 1987 – long before I met him. We got married and became parents. While every family is different, here are some of our experiences as parents with disabilities:

Perceptions and judgement

Vic and I chose to be parents. After an expensive and difficult In vitro fertilization (IVF) journey, we became pregnant. While I thought that getting pregnant was the tough part, I was not prepared for the judgment of others. We would have people stare at us and my pregnant belly like: “How did that happen?”

We had comments including: “Why would you make life more difficult for your children with a dad who is paralysed?”; “Aren’t you worried that your children will be teased for having a disabled dad?”; “That is so selfish on your poor children.”

We have had to develop a thick skin. While comments can be hurtful, we choose to be the best parents we can for our boys. We believe that they are learning many life lessons, including diversity, in a natural and inclusive way.

I remember my son Jamie sharing that he felt so sorry for all his friends who don’t have dads who are wheelchair users: “When they get tired of walking, they can’t climb on their daddy’s wheelchair like me.”

Assumptions

Many people were surprised that we could fall pregnant: “I didn’t know that people like him could have kids”; “Is he really the father?”. I was pitied for having to “do it alone”.

What they didn’t know is that Vic was present and actively involved during the birth of both of our children. He had sung them songs, told them stories and spoken to them when they were still in utero.

Vic is a very “hands-on” dad who watches them playing football, plays endless boardgames and floats with them in the swimming pool. We just do things differently with our carers who assist by being Vic’s arms and legs. He is a very “present” dad and spends more quality time with our children than many of my friends who are dads.

Discussions

We encourage our boys to ask questions and answer them using age and level-appropriate responses. We feel that it is important for them to have the answers as they get asked by their friends and to be honest.

We have to watch and stop them from trying to ‘fight the cause’, but rather be children and have fun.

Yet, compared to their friends, they are far more aware that life is what you make of it and you have choices. We feel that having open-dialogue with our children is really vital in being the best parents we can.

Dr Emma McKinney is a lecturer at the University of the Western Cape. She is also the owner of Disability Included, a company specialising in disability research, children, and employment of adults with disabilities. email: emma@disabilityincluded.co.za