I have been thinking a lot lately about the way in which we talk about, or view people with disabilities. When I started my ‘career’ in community services, I was mentored by a wonderful lady who taught me a great deal about working within the community and for the community. One of the things that I clearly remember her telling me (and it has stuck with me ever since), was that you should never say “disabled person”, you should say “person with a disability”. This seemed to make sense at the time and she explained that to put ‘person’ in front, was more respectful. So I dutifully went about my work, always saying “person” in front of ‘with a disability’, feeling pretty good that I was doing the ‘right’ thing.
Recently I read Stella Young’s Letter to Her 80 Year Old Self which she wrote before she died. Stella wrote that saying “person with a disability” was ridiculous. She went on to say “Cause we’re, like, people first, you know? And if we don’t say that we’re people, folks might get confused”. Stella went on to add that she has never had to indicate she was a ‘person who was a woman’ or a ‘person who knits’. I thought about this deeply and got myself pretty worked up about it. I had never had to say “I am the person with a bunion on her foot”, I was Susie! I felt dreadful that all these years I had possibly got it wrong.
And then I started reflecting on the different ways we as a society have ‘labelled’ people who have a disability. We have called people crippled, spastic, retarded, deformed, deaf, dumb, mute, handicapped, freak, imbecile and incapacitated. There are other disability related terms that society and individuals have used over the years and sadly still use at times. I am not sure why we feel that we have to call people by a name other than their own name, but I do know that labelling separates or distinguishes one group or individual from others. I also know that none of the ‘labels’ seem right, other than their name.
Labelling individuals or a group perhaps helps distinguish people in order to distribute funding or services and perhaps it helps people to ‘unite’ as a group against others who may not have a ‘diagnosis’. I talked to my sister about this recently; she has a young child who has a chronic condition which requires ongoing treatment and attention. She was bemoaning the fact that when she joined this specific ‘chronic condition’s support group’, there was an assumption that everyone in that group felt the same way. There was an assumption that each person wanted to be treated differently and in a special way. She went on to say that she didn’t want her child to be seen as different, she just wanted the assistance when required to help him and her through the rough times.
It is a quandary to me. If you have a label, then you can be included in a group and you may be eligible for funding and specific support. But you then become noticed as different and you stand out and sometimes the label becomes you. If you don’t have a label, you may not be included in the group and you may not be eligible for funding or specific supports which may be detrimental to your health and limit opportunities for quality of life (perhaps). Perhaps this is an individual preference, which way you want to go, or perhaps it isn’t a choice you should ‘have’ to make. It is unfortunate that you have to have a ‘label’ and it’s then unfortunate that this label can become you, or can define you.
There are so many groups of people categorised in the world, older people, people with disabilities, visually impaired, people with a mental illness, obese people. I am not sure what the answer is to all of this, however we would do well to call people by their names often and much and to ensure we don’t stick people in a box and define them by their condition or circumstance.
The National Disability Insurance Scheme (NDIS) has a focus on individuals, on providing services specific to each individual depending upon their needs. The future appears bright under the NDIS for individuals who will be able to choose the services they receive, when they receive them and the extent they wish to receive these services. You would still need to identify yourself as having a disability to receive a service or funding though. Perhaps one day, in an ideal world, people will just receive a specific service when they need it, this service would be based on need, rather than identity.
In the meantime, I am Susie; I have a rather big backside, blond hair, blue eyes, a bunion on my foot and a graze on my knee, but THAT information is quite irrelevant. I need help sometimes in some areas, but when I do, I will ask for this help thank you very much. And if I can’t ask for this help I am hoping someone will know me well enough to act on my behalf in my best interests. In the meantime, and when that happens, please just call me Susie!