Language is a powerful thing and the way it is used and the context behind it can either build someone up or destroy them. Over the years language has had to change, words, statements used ten years ago are now not rightly acceptable in today's thinking. Discrimination against racism, sexuality, gender and a lot more have been challenged and changed to be diverse, politically correct and equal.
Yet I think there is a form of discrimination that has yet to be challenged as it should and one that many parents like myself with a medically complex child face, discrimination towards those with disabilities.
Recently I have spoken to a number of parents on instagram regarding the language used towards their children and I was surprised, dismayed and completely angry.
Why was I surprised?
I first entered the world of disability when my late daughter was born in 1999 I have witnessed over time the changes the world has made to be more inclusive and welcoming. Don’t get wrong we have a long way still to go but there have been many changes. Especially in the visibility of disability, we do now have television coverage of the amazing athletes in the Paralympics ( not as much as the main ones though) we have role models for our children being seen in all genres of media etc and this is a positive step. When my daughter was born 21 years ago it was still suggested that we hide her away or send her away. So in all honestly I was surprised to find that the world hadn’t progressed as much as I hoped.
Dismayed, because the world is moving forward and people are starting to be accepted for who they are, often celebrated for their uniqueness, yet disability is still being treated as shameful and less.
Angry because the words being used to describe our children are damn right, offensive, cruel, limiting and so wrong.
“Disability does not mean less. “
So how do you assess someone’s value, is it their future earnings, the size of their house, the flashy car.
Is it the number of friends you have?
Or is it the joy they bring?
Personally I think you shouldn’t, we are all born into this world equally. Although life circumstances will determine the way our lives are lived they do not enhance or take away any value.
We are all equal.
So what can we do regarding the language used towards those with disabilities?
What can we do to encourage others to actually think before they speak, to treat everyone with the respect they deserve?
Firstly “challenge," no one, no doctor, no government official, no random (needs a life) social media commenter will ever tell me that my child’s disability makes him less. Our children are equal. Their lives are no less valuable than those without disabilities. The medical world is a big area of concern for many as comments like “do you really want to continue their life” “ Is the treatment really worth it for them” and believe me there are many more horrifying comments in this area are still being spoken. A great idea from the founder of Advocates and Angels Bethan was “ to ask the Dr, nurse, whoever to replace the name of the person they are discriminating against with the name of someone they love.” The hope that this will impact them to see that our child is worth the same, sometimes just awakening the person to the impact of their words. Though there is a real ethical debate over limiting medical support to those with disabilities which this pandemic has really risen to the surface. I hope that this awakening will stir up more discussions and challenges against this cruel and wrong discrimination.
Secondly I try to inform, sometimes ignorance is due to not understanding. It wasn’t that long ago that those with disabilities were hidden away in institutions. Whilst those with disabilities don’t have to prove their value, having more role models and coverage of those with disabilities in the media etc will obviously educate and inform.
Thirdly stop the assumptions, having a disability obviously does disable some aspects of someone's life but do not assume that someone in a wheelchair cannot have an education, a successful career, a family and so much more. Do not assume that those that cannot speak do not understand. Often I have found people talking over my son if he isn’t in the room, I know this happens to many others. Again disability does not mean less.
My son Daniel has a long list of conditions that leave him with a complex disability, but his disability is not what defines him. He is a loveable, cheeky bright young boy whose life is full and happy. He is my world and believe me if anyone tried to see him as less or discriminate against him I would fight with all of my might. Yet in all honesty battling is what I and many like me have to do and this is what needs to change. Those with disabilities need to be seen as equal, and until this happens the world cannot be a just fair one. We need to stamp out misconception and prejudices.
Disability does not mean less.