Friday, December 21, 2012

How have you changed?

Holland Bloorview family leader Cheryl Peters asks: "Have you changed as a person since having a special-needs child?" Hop on over to Parent Voices on Facebook and join the discussion. How have you changed?


I have changed in that now I am careful about the language I use to describe my child and other children with special needs. I don't call them a special-needs child. I remember that they are a child first.

About the Parent Voice FB page, Holland Bloorview expressed surprise that no parents commented on the researcher's piece about rethinking 'normal' in children's rehab. There are many possible reasons. Let's keep in mind that parents are often busy, stressed, or not aware of the posting. Plus there seems to be so much discussion online and in books about this topic that maybe some parents would rather discuss something else.

Hi Anonymous 1 -- while the philosophy behind people-first language is good, many within the disability community (and the child disability research community) are choosing to not be rigidly "people first." That is -- many people with disabilities choose to call themselves disabled vs having a disability -- and as they are speaking for themselves, they should have the freedom to define themselves in whatever way they feel comfortable. There is a movement amongst pediatric rehab researchers to refer use the language "disabled children" to mean that they are referring to children who are disabled by the environment or by attitudes. There was an interesting blog written recently by a young British woman who explained why she chooses to call herself disabled. I will find it and post it. In this instance, Cheryl Peters, a mom, sent the question as it is written above, and I was comfortable leaving it that way knowing that she sees her daughter as a child first. Sometimes people can use all the politically correct words but they are patronizing. On the other hand, sometimes people may not religiously follow people-first language but they follow the intention of the philosophy in their attitudes.

To make a long story short, people in the disability community and the related research community are starting to think differently about religious adherance to one way of describing people with disabilities.

Hi -- here is the link I mentioned:

I am not a 'person with a disability' I am a disabled person

Hi Anonymous 2 -- Thanks for writing.

The posting about rethinking normal in children's rehab is by a child disability researcher and physiotherapist who is challenging the use of 'normal' as a benchmark in rehab.

She is questioning why kids who walk rate higher on quality of life measures than kids who use a wheelchair. What if the child has always used a wheelchair and that's the way the child gets around? Does it necessarily mean she has a poorer quality of life?

We've never published on this topic in BLOOM before and while I imagine the topic is covered in the disability studies field, I don't believe it's one that many of our parents have read about it (it's not covered in mainstream media). I understand that parents are stressed and busy. But I did want to draw it to the attention of parents who might be interested because I believe it's is a very positive movement for families and for affirming the value of children with all abilities.

That said, the whole point of Parent Voices is for parents to generate their own discussions.

Thank you for the info and links. I understand how others feel. The question asked how we have changed as a person and so I was answering from my perspective as a person. I hope that I didn't offend anyone. I was only expressing how I have changed and I did not mean to pass judgement on anyone else's use of language.

Hi Anonymous 1 -- your comments are always welcome!

I misinterpreted and thought you were questioning the specific wording of the question (vs. sharing your experience).

I think how we describe disability and sensitivity to the language we use (and what others use) is a really important change that happens to many parents after they have kids with disabilities.

Thanks for sharing!

I will openly admit I get confused about what is PC in the descriptive language world. My son is a person with autism/autistic/has autism. I might say any of these things. I say them with love. I don't want to be afraid to speak up because I am afraid of stepping on toes because I don't "get" the formula of "how" I am "supposed" to say it. First and foremost he is my son.

I also do not get offended at other peoples' wording. Maybe that is why I get so confused.

Just my thoughts.