Thursday, September 27, 2012

Coming clean on the word disability

I think my best writing happens when I most don't want to write about a topic.

Perhaps that's because it gets at my own ambivalence about the topic and my desire to mask that vulnerability by remaining silent. It means I'm confused and I don't know exactly how I feel. All I know is that the received wisdom on the subject doesn't sit well with me.

Today that subject would be use of the word disability.

Outside of my work at Holland Bloorview, I find I rarely use the word in conversation with people and in particular with my son Ben, who has many diagnosed disabilities. In fact, I can't remember when I last spoke about disability with Ben. A part of me thinks that I "should" be talking about it on a regular basis with Ben, to help him become a better advocate for himself.

But the truth is that in our everyday life I don't see Ben as disabled. The first quality that comes to mind when describing Ben is not disability. I see him as different, yes. Challenged by unusual and grossly unfair circumstances, yes.

I also see him as he defines himself -- as smart, funny and gentle.

I don't reduce him to what he isn't -- "lacking" in ability or the "opposite" of able, which I think is the most common mainstream use of the word disability.

In the disability community we tell ourselves a story about the word disability. We tell ourselves that it used to be a word used to oppress our loved ones, but that disability activists have claimed ownership of it and freed it from its earlier connotations.

We tell ourselves that when people hear the word disability, they don't conjure up an image of lack or loss.

That may be true within the disability community (though we still tend to view certain types of disability as more okay than others) and in places like Holland Bloorview, which have a disability-positive culture.

But when I read mainstream news or follow generic parenting blogs, I see a narrowing of who is valued and who isn't in this society. I see a rigidly-held concept of what it means to live a "productive" life and what is needed to get there, not a flexible one.

I see a culture that places more value on individuality, conformity and competitiveness than community, diversity and collaboration -- though companies and groups launch convincing PR campaigns to suggest otherwise.

I do not see an opening or shift in how people view the word disability when attributed to a person.

I see a culture that is quick to judge people as "deserving" of their situation in life. If I'm a success by Western standards it's because I worked my butt off. And if I'm not, it's because I was lazy. Most people still operate under the fairy-tale illusion that we start off equal in life.

A couple of years ago I led a workshop on how to write about disability. As I put my slides together, I remember feeling torn. Two of my directives seemed contradictory. On the one hand I told people to use neutral language devoid of value judgment: "Stay away from words that elevate people with disabilities to superhuman (saint) status or suggest they're less than human, tragic (abnormality, defect, victim)" I said.

On the other hand I gave them the seal of approval on use of the word disability. I told them that disability is the preferred descriptive term.

But there isn't anything neutral about the word dis-ability. The word "dis" is described in the Oxford dictionary as "expressing negation" or indicating "reversal of a state."

Who wants their human identity to be summed up as a negation of something?

My other son has attention problems. He hasn't been formally identified as having a learning disability, but he takes medication to improve his focus. Last night when I sat in a therapy session with him the counsellor referred to his "learning disability" while we went through a psychological assessment. I don't think he's ever heard his attention problems classed as a disability before. And I had to wonder how that sat with him.

In his head, was he thinking: "I have a negation of the ability to learn?"

No, he wouldn't know the dictionary meaning of the word "dis," but he'd know intuitively that it was bad. When you diss someone or something, you put them down, right?

And if we were judging the precision with which the term "learning disability" allows you to envision how a specific child's mind works or how they live in the world, would you give it an A?

It's the same when applying the word disability to a physical or developmental disability. It tells you almost nothing about the package of qualities that is that person.

Sometimes it will hit me when I'm doing an interview, how clunky, inadequate and biased the word disability is as a descriptor. I'm so used to letting the word roll off my tongue that I don't hear it the way the average person does -- the way people outside our community do.

And I'll catch myself feeling stupid when I ask someone to comment on something related to "kids with disabilities" -- as if this diverse population of human beings could be lumped into a separate species.

Disability in the common vernacular is about what isn't -- it's the absence of something that our culture has deemed good.

It would be as limiting and non-descript as saying I was non-male or non-hair (I have alopecia) or non-young. It doesn't say anything about who I am.

Recently I wrote to Xavier Le Pichon, the French geophysicist who helped create the field of plate tectonics. Contrary to popular Western conceptions about what makes a person human, Le Pichon believes that fragility and empathy are our defining traits. While developing his scientific theories, Le Pichon lived in the original L'Arche community for people with intellectual disabilities. His children grew up there.

"Our culture views disability as a loss, as taking away an essential part of a person and diminishing their value," I wrote to Le Pichon. "How do you view disability based on your time living in L'Arche?"

"In L'Arche, I do not think of...persons as having disabilities," he said. "They are just friends. I consider some of them as being the closest friends I ever had. When you love somebody, you do not think of him as having disabilities. He is what he is. That's it."

It reminded me of when I visted L'Arche in France in the summer. When I asked questions about people with disabilities there, I was met with a blank look. Just who was I talking about? Was I really that coarse and simplistic in my use of language? At L'Arche they don't use the word disabled. It isn't in their lexicon.

I get that in order to acquire funding for the services our kids need, they must be categorized.

But on a personal level, I don't think the word disability plays a big part in many family's lives. I think families are more focused on what their child "is" -- which is immense and can't be quantified in words -- not what they aren't.


lovely post. thank you so much! Reminds of one of Jessie's IPRC meetings, around grade 5, when she started participating more fully in all meetings (nothing about me without me!), and when they got to the definition of the disability section, she said .... If you have to give me a label it shouldn't be developmental disability, it should be .... [and here she took a moment to think and find the right words] . . . it should be CREATIVE! and KIND. That it my label! Needless to say, I cheered, and cried, in equal measure.

A thoughtful and well-crafted post, Louise (as always). I love L'Arche's philosophy of: 'what is, is.' My dad is a Buddist and he says that too. What that offers is peace and release from the struggle of what is not.

Maybe we should start a movement to rename disability to: isability!

Great post. I especially appreciate Le Pichon's comment about "He is what he is. That's it."

I agree with everything you point out in this post. But it both does and doesn't boggle my mind that these ideas are considered pretty radical to most.

I was just talking about this today with a friend who also has a child with significant healthcare issues. He asked me whether I wished that my daughter were "normal." I thought for a bit and decided that while I sure wish she had no seizures, I couldn't imagine her any other way than she IS.

But there isn't anything neutral about the word dis-ability. The word "dis" is described in the Oxford dictionary as "expressing negation" or indicating "reversal of a state."

This is the most poignant part of your post for me Louise.

I don't use the word disability when describing my daughter. It doesn't 'roll of the tongue' easily for me. I think you've captured why (for me) in this post.

She has many challenges, but she has so many abilities. I have intuitively taken to describing her as 'not typical' (and to that end, who is?).

Disability to me feels disappointing. Something is lacking for that person - or they are less than. I don't use it and know I feel an increased sense of justification a to why I don't.

Great post.

L'Arche was somewhere I considered for my daughter, it's good to read more about it. I've seen a couple of posts recently about language in relation to words like disability. Perhaps they could be changed, but when you have a child who needs everything done for her, it's hard to think of a word to describe her condition positively; I call her Smiley, because that is one thing she does very well indeed :D (over from Love That Max)

Thanks for the great story Nan! It reminds me of when a friend's daughter got her words confused and said my son was in the class for kids with possibilities -- instead of kids with disabilities! It sounds like Jessie has a great sense of herself.

Hi Sue -- Thanks for your message. Yes, or we could call it "is-ism." "I believe in what is." I wasn't thinking of the connection to Buddhism and it's a good one.

Hi Jennifer from Early Birdies! How are your kids? So good to hear from you. Yes, I agree that what seems quite self-evident and obvious in Le Pichon's words is so at odds with modern mainstream thinking. Thanks for writing!

Hi Elizabeth -- I've often thought the same thing. Without their differences our kids wouldn't be "them." They would lose their essence (But of course we would remove the pain if we could).

I've often thought about how I would feel if someone started talking about how they "wish" I was -- which seems to be what we're doing when we think about what our kids might be like without disability. "If only she had hair, and eyebrows and eyelashes. If only she wasn't so neurotic. If only she wasn't carrying a tire around her waist. If only she would go to workout when she says she would. If only she was perfect and had it all together!"

Thanks for writing Julie. I was just going through the notes from our interview and I'm really grateful we can share your story!

Thanks for coming over Looking for Blue Sky! Smiley is perfect. I visited your blog and really connected with the post you wrote about what it's like to be heavily involved in caregiving when your peers' children are growing independent and leaving the nest. Kind of a "reverse-parenting." It would be wonderful if you considered writing a guest blog for us!

To Elizabeth, part 2.

Re wondering what your child would be like without disability I guess is like other people wondering what we would be like with abilities we don't have.

For example: If only Louise was a famous scientist destined to eradicate some disease. If only she was an entrepreneur with an incredible business idea. Why couldn't she have been an Olympic sprinter? Or hurdler? Or contender for the Tour de France (oops, I guess she'd have to be a different sex then too). It's so sad.

Why couldn't she be like Mother Teresa? She'll never know what it feels like to be a quarterback, or climb Mount Everest. Or call herself President and CEO. If only she hadn't quit piano, maybe she could have been a professional musician. She seemed so artistic early on. Don't you remember the embroidery she did on pillow cases? She played all those John Denver songs on the guitar. Where did things go wrong?

If only she'd had a different body, maybe the National Ballet School wouldn't have rejected her (after asking her mom to send a photo of her in a leotard/bathing suit). Maybe it was the photo we sent. Maybe it was the bikini.

Remember when Louise sold Avon as a teenager and everyone said she'd be a great salesperson? They said she could sell anything. What happened?

She got her Juniors in swimming, but it was so embarrassing when she failed Seniors (and her best friend didn't and went on to get her Bronze). If only she didn't have bad knees and could run long distances like D'Arcy. Or jump horses the way she used to. Those were the days!

This post got me thinking - in a really good way.

Though I do occasionally use the word disability (esp. when writing/talking to a broader audience via Today's Parent, for example since it is part of our culture's lexicon) I tend to use the word "challenges" when I'm talking about the things that we're working on with Syona. I think the reason I do this is because for her - and us - they are challenges. I think we see them this way because she is so young so we're working on everything that has been impacted by her CP and because Syona herself demonstrates a strong desire to at least try and do the things that she is currently unable to do.

I echo what others have said...our lives are simply our lives. Syona is simply herself. Sometimes our life seems so complicated, but other times I truly experience joy from the most simple of things (e.g. playing with tissue paper while lying on the ground with my daughter).

Something that I just realized is that when I'm talking with or meeting people that don't know Syona very well or haven't seen her in a long time, if I spend a very short amount of time telling them what she can't do then they are able to focus on what she CAN do. Otherwise people tend to spend their time/attention wondering whether she can sit, stand, walk or talk. Wonder if others have noticed the same thing?

Thanks for sharing your thoughts in progress :)

Oh, Louise -- your comments are making me laugh out loud. Hard!

Indeed a very heartfelt piece of writing. As you know i use (extremely) physically and mentally compromised child (since that is in line with my life experience with my son). I've never thought of my son as disabled, nor does the use of the word retard in popular culture bother me. You write about the two distinct worlds though, those in the know and the general populace/culture. The question remains is there a way to bring them closer, to close the cleft. Well, it has been closed in many cultures of European countries. So then the issue really is, why is North American culture so backwards in these issues since it is surely not an issue of funds. Direction and intention of education can only go so far when, as you state, the emphasis is on a particular standard of accomplishment of the individual and not of the need to share.

Hi Eric -- Thanks for your message! Has the gap between the way people within the disability community and the mainstream view disability in Europe narrowed? I'd love to hear about examples.

I travelled in France and Italy this summer and the major cities in both were highly unaccessible and we didn't "see" people with disabilities out and about. I've also read a lot in the British media about the scapegoating of people with disabilities there as freeloaders who are abusing the benefit system and many incidents of disability hate. I'd love to hear of any examples where you feel attitudes have improved in Europe.

Thanks! Louise

Hi Eric -- Thanks for your message! Has the gap between the way people within the disability community and the mainstream view disability in Europe narrowed? I'd love to hear about examples.

I travelled in France and Italy this summer and the major cities in both were highly unaccessible and we didn't "see" people with disabilities out and about. I've also read a lot in the British media about the scapegoating of people with disabilities there as freeloaders who are abusing the benefit system and many incidents of disability hate. I'd love to hear of any examples where you feel attitudes have improved in Europe.

Thanks! Louise

Lousie hello. Without a doubt the northern countries are a step ahead of their southern neighbors. Generalizing, Sweden, Norway, Denmark, Holland and Germany are ahead in this game. Parents can employ themselves as caretakers of their own children, accessibility is mandated by law, opportunity employment which 'guarantees' jobs, great social services (when compared to others) and especially day facilities as well as live in hostels, again, mandated by law, make for a very 'comfortable' experience. In a day to day environment people are much more educated and understanding about impairments and have been for decades.
Normally outings are planned as group events and then you will see busloads or at least classroom size groups out shopping, taking in some fresh air etc. The fact is that many facilities are pleasant and routine and familiar environment are often preferred for extremely disabled. During the twelve years I spent living and traveling extensively in Europe I've encountered the disabled on a regular basis.
Are things the same nowadays? I don't know. The whole world seems to me to be changing into something much more concentric and aggressive. There is less tolerance everywhere so if we look at tolerance specific to disability it is only natural that the lesser tolerance will be apparent there as well.

Thanks Eric for the detail on supports in Northern Europe.

I do recall hearing about incredible, innovative in-home services provided to a mom of a child with disability in Norway.

However, I also recall an article in a Danish newspaper about wanting to make the country Down-syndrome free by 2025 through prenatal testing and termination, and there seems to be wide public accepance of euthenasia for newborns with severe disabilities there.

As you say, we seem to be seeing a decline in acceptance and tolerance of difference everywhere.

Hi Anchel -- Thanks for your message!

I think you're right about how upfront education about how a child is affected by their disability can sometimes help people move on to seeing the child and not getting hung up on the disability.

As I mentioned in the blog, I have become so used to saying disability and disabled that I'm numb to the actual meanings of the word in the English language and in our culture. I think it's really hard to work against such a negative descriptor in the general population, but I also acknowledge that we need a word. Thanks for wwriting!

I like this, definetly makes me think. Your right in our small community of those who know ours and your kids, the word doesn't give another person preconcieved notions. But to the world, it means something is 'wrong'.

I have to say, I never think of disability when I think of any of the kids and adults. When I tell new staff about Ben, I say "he's funny and handsome. He has an incredible knack for detail which he uses to help you see things from his perspective. He enjoys food, like me and will try anything once. He enjoys 'safe danger'."

I don't think the word disability rolls off my tongue, I would hope not anyway. I don't tell anybody what the kids disabilities are, even the strangers that ask me on the street.

We are all so much more than what is visually obvious when you first meet us. I am slowly but surely changing people's minds about what the guys and gals I support are capable of. What my friends are capable of! I have changed a few minds. One step at a time.