I think there is a plot afoot.
I am not normally prone to conspiracy theories. I think that there are conspiracies, mind, but that most of them are conspiracies of coincidence, but even those can be conspiracies of consequence. Right beside my computer is a piece of paper upon which words are carefully written, thoughts carefully turned into questions. It was handed to me by a woman with a disability, who had attended one of my workshops a few days ago. I've read the first question over and over again.
You see she's given me the questions but no way of ever getting an answer to her. No contact information, no email, no address, no phone number. I know she wanted me to answer her questions, she handed them to me and whispered a request that I answer.
Buried, not so deep, in the question is a criticism of the class I teach and the way I present myself in the class to the class.
Yesterday was my second such presentation, though on a different topic, to another group. It went well. Very well, I thought. Then a young man, much younger than the writer of the aforementioned note, approached me with a question. It was the same question. I got chills up my back, it was like they had been secretly in communion with each other and were putting forward a challenge to me. But then, I couldn't answer him. His ride was there, my ride was there, it was time to go. He looked at me with purpose, I knew he wanted me to answer the question.
Here's the question:
Why do you use the word 'disability' so much when you talk. Isn't that labelling people?
To be sure these are not the first times I have been asked a similar question. Mostly by people with intellectual disabilities, never by people with physical disabilities, a distinction that is here important to make. I've decided in to make a feeble attempt at answering a question that I think is important. I'm hoping other readers here will take up the challenge to answer the question too. But I answer by beginning with my own criticism.
People with intellectual disabilities are too often led by philosophies and politics that are developed by non-disabled people who have good, even the best, intentions. And as non-disabled people, people who have never had to go through the process of developing disability from 'horrifying concept' into 'personal self hood' ... disability is often something to be 'denied' to be 'wished away' to be 'pretended invisible'. Disability is certainly not to be loud, to be inconvenient, to be public knowledge. Therefore there is a 'we're all the same' sentiment which is preached and preached and preached again to kids with intellectual disabilities. It's a mantra of 'shame' and 'denial' it begins the journey to a life of 'pretend normal' not 'proud difference'. It's hurtful.
This happens with people with physical disabilities, 'I'm just the same as everyone else.' It happens with people who are newly disabled, 'I'm the same person as I've always been.' Both have the sound of desperation. Because, of course, it's not true. Disability does make a difference. It means something and often something that requires some startling and some even drastic adaptions. My disability came with a cost, to me, to Joe, to my job, to my mobility, to the things I choose to do with my time, to the places I choose to go and the places I actually can go. It did all those things. I had to ride the river of change until the raft pulled ashore at a place emotionally, physically, intellectual and spiritually from where I could begin again, anew. I will never say that I'm the same as before because like everyone else, I'm in life's school room and sometimes the lessons change me.
When I do workshops for people with disabilities, I mention disability because disability matters to the subject at hand. You can't talk about bullying and teasing without talking about disability, or abuse prevention without mentioning disability, or rights without mentioning disability ... when the class attending has a disability. We have to address the very specific needs of the disability community for self protection, for understanding the danger of bullies, for understanding the importance of rights.
I also mention disability because I know many have never been taught about disability as something that one can be 'out' about. That disability isn't a 'label' it's a description. More than that 'disability' is a part of us that gives us the richness of a community, the disabled community may be the coolest gift my wheelchair gave me. Disability gives me cause and purpose and a legitimate voice for both praise and protest. Disability isn't to be denied, it is to be embraced. It's part of the larger human community. Disability defines us not confines us.
Why do I mention disability so much in my workshop? Cause I want to say, 'but ya are Blanche, ya are!' Difference, Diversity, Disability ... all part of the vastness of the social world, all part of the vastness of the human experience, all part of the whole community. Difference, Diversity, Disability ... we make community and the community would be less without us. Difference, Diversity, Disability ... we bring with us challenge and demand for change, just like every single other member of every single other community. We are the same in what we want, but we are proudly different of who we are when asking.
So for those who's plot is afoot. That plot to convince us that we're all the same and difference is to be denied. Take a look at your finger print, now take a look at mine ... there's a message there ... get it.
While I have never had the pleasure of attanding one of your conferences, I am not sure how you would DO it without using that term.
On another note, please chec out this blog entry from a Mom of two wonderful little people with Down syndrome. They are absolutely great - the entire family! :)
This post happens to speak directly to people first language and when to correct others, but it seems to go along the same vein....
I'm with Stephanie. I honestly don't know how you would address these topics without using the word disability.
And, I know this is a bit off topic, but you have to check out this most amazing post...My Son Is Gay. The world would be a much better place if more people were like this mom.
Well, maybe it isn't so off topic because she is embracing the differences.
Yep. Letting other people define disability as a bad word for us, from their fears of us and what we represent, is a bad thing. & gussying up our own existence for others is at least a problematic thing.
Your answer mirrored my own thoughts, but so much more eloquently. You would be ignoring the 800 pound gorilla in the room if you didn't call it by it's name.
Not a label, a fact.
Labels are neutral in themselves--neither good nor bad until invested with these qualities by the user. Labels can help legitimize a need for support, as with two of my grandchildren. I'm so glad they're getting the extra help they need due to their extra need in some areas of learning. But of course that isn't their whole identity. Perhaps that's the underlying issue in both people's question. They have "disabilities," but they don't want to be defined as "disabled."
I agree with Belinda's last statement. Society labels my son as disabled (*severely* disabled when it comes to government paperwork), and I find that I fight like hell to have people, (friends, family, neighbors, teachers, educational assistants and classmates) see BEYOND the huge elephant in the room in order to see the boy.
It's quite the balancing act to erase that label that people WANT to define Gabriel by. This label of "disabled" is one dimensional, hence my fight.
As you say though, it is a part of him as unique as his own fingerprints. But there are many parts of him to make him who he is.
I really appreciate the fact that you use the term disability. I was raised on the "we're all the same" ideology, and so disability (or race, ethnicity, sexuality, or other categories) were not something talked about. We just pretended those differences didn't exist. Hearing you use the word so comfortably has helped me to acknowledge and talk about differences in a constructive way. I've found it really freeing to be able to put a name on why certain of my students (I'm a teacher) struggle in certain areas while excelling in others. It makes all the difference in the world to be able to put it in words. So while I appreciate the concern about labeling, in particular if that one label ends up subsuming all other qualities of the person, thank you for providing us with the language to acknowledge something important.
Ah but Belinda, would they bristle and complain if they were 'labelled' as 'girls' or 'boys' as 'blond' or 'brunette' as 'athletic' or 'graceful'? The very desire to avoid the word 'disability' is evidence that the word as a 'descriptor' is seen as disparaging. It's this that I rally against. I am disabled. I am OK with that. Beyond that, I am proud of who disability makes me and the community it gives me entrance to ...
I agree with you. Disability is important, it is a part of who we are, and accepting it is empowering. As every magician knows, naming a thing gives you power over it. (That last sentence was loosely quoted by a speech from Pratchett about Alzheimer.) We just should make sure we don't forget that there are lots of other aspects to us. But you don't seem to be forgetting that.
A couple of years ago, I worked as an Special Needs Assistant, basically my job was be a one on one helper for a little boy in grade 3 with autism and an intellectual disability. This beautiful 9 year old (I’ll call him Michael) was functioning at a developmental age of a typical 4 year old. It was one of the most rewarding jobs of my life. Throughout the day, I would adjust his curriculum so that he was doing similar activities as the rest of his peers. I always told his classmates to come and see me if they ever saw Michael being bullied or if there was an incident on the playground. One afternoon, a little girl from our class said that my little guy was throwing sand at the other students in the class. This was very unusual, his classmates were some of the most caring and accepting kids I have ever had the pleasure of knowing. All of them have been in the same class since kindergarten and they would always include Michael in their games. Michael came in from recess visibly upset, when I tried to ask him why he had thrown sand at his friends, he was talking too fast and I could not understand what he was saying. I asked the classroom teacher to take Michael to the computer room so that his classmates could tell me what had happened. From what I could understand was that they had being playing a game and they had changed the rules, but Michael was not understanding the new game. The whole situation was so ridiculous the kids were mad at Michael, and really he was just a confused kid who could not understand why his friends were yelling at him so he threw sand at them. I looked at his classmates and asked them if him he was the same as them, and then all of them said practically in unison, Michael is the same as you and me… No he’s not! Their mouths practically hit the floor! I was the first person in the 4 years that Michael had been in their class to say the words out load. Inclusion in the classroom can be a really great and beautiful thing but we have to stop pretending that everyone is the same. Acceptance that is what we need to teach our children.
I had a huge long rambling response but decided to cut it short: I fully agree. I am disabled and to tiptoe around it and pretend it doesn't exist would be silly. I am also many other things. Everybody's got labels. What we need to learn is not to let that one label -- disabled -- override the rest so that it's all that is seen about us. And avoiding it isn't going to help anybody at all.
Non-PC opinion: I moderately despise people-first language and all such efforts at talking around the screamingly obvious. All I ask is for people not to be jerks, but saying I am disabled is not jerkish in and of itself...it's true.
Dave, It's me again. I am thinking this through, so forgive me if I'm bumbling as I do.
I think the descriptor "disabled" is different to characteristics such as those you mentioned because it can be seen as a descriptor of deficit, while being blond or a girl isn't (usually!)
I agree that accepting and acknowledging the impact of a disability is important and it is silly to tiptoe around it, and I also understand why those young people asked the question.
It's interesting to see the points of view expressed by other commenters.
I'm a law student currently writing a paper on how Cdn law protects/prohibits the autonomy of persons with developmental disabilities. I would really love your input on the topic. If you're willing to discuss it with me please send me an email.
I attended a training recently where the facilitator used the term "people affected by disability". I like this term. It stresses people first. Works for me.
Ah, but Belinda, you made my point for me. They see disability as deficit? It's not deficit, it's difference. Remember not that long ago, within living memory, it was considered a deficit to be a 'girl'. That changed because of the courage of a few to question the assumption of the many.
As to person first language, which some here have mentioned. I use it. It's been ingrained in me (and I don't want to get nailed every time I speak) but I'm not rigourous about it in my personal life. I'm a disabled guy. Good heaven's I'm not a person who's gay, I'm sure that many of you would find it weird to be described as a 'person who's a woman' or a 'person of the female gender'. Person first language seems to me to suggest that 'personhood' is so far off in the distance when a disability is present that we'd better mention it or we'd forget it.
Great discussion all.
Kristin, thanks for the blog post you sent. It was terrific!!
Dave, I concede that I have not fully worked this through and you are helping me to. It's in the back and forth discussion that our own thoughts are crystalized into values. Thank you for patiently sticking with me through the process.
In labelling we need to remember that other categories of difference affect disability.
This intersectionality is present in examples like how a black woman who is disabled would experience disability differently than a white man who is disabled. So even though the term disabled can be helpful it doesn't provide the full picture of disability.
So heres where assimilation vs resistance comes in. Do we create a culture where the disabled try to become part of the mainstream or do we resist the normative discourse of the abled and fully embrace being different?
A speech that echoed yours
"Remember not that long ago, within living memory, it was considered a deficit to be a 'girl'."
I assume by 'not that long ago' you meant like, five minutes before you wrote that? Because it is a bit like saying, "It used to be considered negative, so very long ago, to be openly gay." - We both know the reality of that and the difference between the law, and backwoods, high schools and bullies.
As to the question, it is one that I would be very interested in as well. Can you send me a recording of your conference presentation. If the question was 'Why do you use the word disability to talk about yourself?' - I would be surprised, but you are specifically labelling others as disabled. And how that is done is a tricky business. That's the question right, "Isn't that labelling people?" - which means you must be talking about groups or individuals and stated they are disabled. And doing that frequently. And it is 'labelling' that they have an issue with, which would not come up talking about rights, or bullying - "Bullying should not occur for any reason, regardless of ethnicity, race, orientation, disability, gender identity, religion...." - not labelling. "A child with XXXXX, who is disabled, will not be able to...." - labelling.
The thing is, often, a disability can have very little impact on the great impact of life. One's orientation is not something that needs to be noted for a great many things in life and if someone did that, talked about how 'In the morning, when Beth went to get her coffee, since she was a lesbian, ....." - I too would ask, "WTF? Why is this person using a label in situations that require no label?"
You write, you don't disabled write, you give conferences, you don't give disabled conferences (you may have some attendees with disabilities). I don't know why they asked the question either, but I can't concieve of it coming up because of mentioning rights and bullying.
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