It's funny.
Well, maybe not.
It's been a week of getting mail. In the space of two days I've gotten two letters from people I thought I'd lost touch with. One was a long and chatty missive from someone way back. Nice to reconnect. Actually, it was nice to actually get a real live letter. I haven't had any letters in a long time. I get emails and text messages but this was a 'sit down with paper and pen and write a letter' letter. I finished it and handed it to Joe and he too enjoyed the experience of reading words written personally, and, just for us.
Now, I've got to write a letter back. I realize I've got to give the news in my letter that I'm now a wheelchair user. I wasn't the last time we saw each other. My friend doesn't work in the 'disability biz' and I'm not quite sure how she is going to respond to the news. I don't think it's bad news. I don't want her to react as if I've given her bad news. To me ... it's just news.
I've struggled over the wording and the explanation and I erased way more words than I've written. Oddly, it struck me that the only other time that I had this much trouble writing to tell a friend something was when I 'came out' in a letter to someone who's friendship I valued but who I didn't trust to tell personally. I was afraid, not so much of rejection, but because I knew I would cry no matter what the response was. I'd cry with relief at acceptance. I'd weep with sadness at rejection.
Here I don't fear rejection, I feared, I don't know - diminishment or, worse, pity. Disability just is. It just is part of my experience now. I'm still me - although me altered by new experiences. What words do I use to say, 'hey, and by the way, I'm using a wheelchair now' ... and have that understood in the same way as 'hey, I bought a new car' or 'hey I moved to a new apartment'. I know that maybe it's bigger than those things, I know it means maybe a bit more - but not that much, not as much as other things, not as much as I first thought. Coming out as disabled is just as complex and fraught with emotion as coming out as gay.
For the first time I have some idea about the feelings that parents of a child with, say, Down Syndorme, have when they set about telling people about their child. What words do you use that will encourage a 'congratulations' rather than an 'I'm so sorry'. How do you 'out' your child and 'out' yourself, one as having a disability and the other as having pride in a new and beautiful baby - things that many think are mutually exclusive.
Words. There ought to be words, a language that conveys acceptance and, even pride. Words that weild off pity and sad smiles and seeing 'thank god I'm not you' in small print at the back of someone's eyes.
My life is joyous. Is full of purpose. My life has delicious weekends. My life has meaningful days. My life is wonderfully and completely mine. I value it. I want it valued.
So, I've got a letter, waiting to be written.
Why is this all so easy to say to you. And so very difficult to say to someone, in a letter, someone who once called me friend.
15 comments:
and I think still does....call you friend.
Speaking as a bisexual woman with some disabilities that are "visible" (I'm deaf...which in some contexts can be "visible") but also some disabilities that are not (I have attention deficit disorder ... I also have a muscular condition that isn't obvious yet because it is currently still very mild). And, yes, the struggle can sometimes be the same. There are people I interact with who still don't realize I have attention deficit disorder, for example, in part because although some people are understanding others may doubt I have the diagnosis and fail to understand the real ways it can impact me ... and yet others might sometimes overreact and assume it means I "can't" do certain things that are in fact perfectly within my grasp.
As for your last question ... I think the difference is ...
1. At this stage, you've already "known" us, and we have "known" you for years, and the people who are cool with it have stuck around, people who aren't are no longer here ("known" with quotation marks because the way we "know" each other, while genuine at some levels, is not quite the same kind of "knowing" that people get through a more extensive process of conversing over time or perhaps doing activities together and thus not nearly as intimate as other forms of "knowing" each other)
2. It can be easier to tell strangers and superficial acquaintances because we have little or nothing invested in the relationship. If they are okay with it, then great, there could maybe be a potential new friendship in it ... or else the relationship could remain at a superficial level not because of the revelation but just because not every relationship is going to progress to anything much further than, "Hi, how are you?"
With someone you've known for years, you have more invested in it--time wise, but especially emotionally. So there's more to lose if their reaction is something other than what you desire. With friends you also tend to develop certain expectations that they will deal with you in a certain way ... you come to depend on that assumption, to care about that assumption and connect a certain meaning to your expectations. Revealing any new information that might be unexpected or viewed as "significant" in some way has the risk of altering those expectations and that can feel threatening even if you're fairly sure they'll be okay with it ... at least eventually.
Just Oh by the way the topic. Maybe if you don't make a big deal over it?
Or perhaps just say I've been writing this blog and you should check it out because it reflects my life?
Nathan said what I was going to.
On a related note, what would you want your friend's response to be? Honestly, what's an appropriate response? "Oh, that's great!" is wrong. "I'm so sorry" is pity. "I don't care," even if well-intended, sounds, well, uncaring. I'm asking because, in trying to avoid pity, I've been accused of being crass and uncaring when discussing a friend's or relative's disability. Most recently a disabled friend of mine told me in confidence to be careful, that while HE understood what I meant in downplaying disability, that I came across as really uncaring and not understanding. And that in his experience, it was really hard to live with his disability, and my blowing it off as "not a big deal" seemed really demeaning.
Anon, that's a good question, I think something like, 'wow, how are you doing with that?' would allow someone to respond and let you know where they are with the whole thing. I'm just about finished my letter, my friend is a luddite and doesn't use computers and didn't include a phone number! So, I'm trying simply to be clear that I'm ok with who I am and how I get around and thereby provide leadership regarding reaction. When I don't know how to react I try to hand the reins back to the other person and then go with them. That's convoluted but does it make sense? What do others think, this is a terrific discussion question.
If I knew someone was likely to go overboard with pity, I would try to frame it positively, like for example, "I had been having trouble walking, and I was in pain, but fortunately I was able to get a wheelchair. I have more freedom now, and I'm not in as much pain." That might be less likely to get a "how devastating!" response.
At the same time, when times are tough and you would some empathy, sometimes you can trust people with both the positive and the negative. For me, what I tell people depends on whether I'm just trying to protect myself from their reactions, or whether I actually want to open up and talk about my feelings.
Occasionally it's useful to name the area of uncertainty or disconnect, to say flat out something like "there is something else to to tell you, but I'm having difficulty in figuring out how to do that because what may be seen as a problem by most people really isn't for me -- but that assumption that it should be a problem, is." Occasionally.
On the other hand, I adore the elegance of this, by CL:
"If I knew someone was likely to go overboard with pity, I would try to frame it positively, like for example, 'I had been having trouble walking, and I was in pain, but fortunately I was able to get a wheelchair. I have more freedom now, and I'm not in as much pain.'" That is, just by the simple initial framing of the information, the rest of the conversation gets set on a the path you want.
I suspect I chose one way or the other, or some mix, depending on that richness and complexity of the individual nuanced situation which is impossible to describe. But as to the broader issues, I think mulling over these sorts of questions is fundamental to challenging ourselves and other people in day-to-day life. Not at conferences or in books alone 9although they have their own roles to play), but in the messy parts.
Sometimes I think the real key to ethics is identifying the problematic occasion, not so much in how it is addressed. The former is the rate-limiting step.
My son with Down syndrome is almost fourteen, so it's been awhile since I was faced with telling "everyone". I still have those moments when I reconnect with someone and the subject comes up - or maybe I just feel like I have to bring it up. With Facebook, a lot of my posts have to do with Down syndrome or disability, and I'm sure people I haven't seen since high school wondered about my choice of topics at times.
I just think it's almost always awkward because people really just don't know how to respond. I still don't know how to respond to a new parent because I've seen so many different reactions, that I don't think there is a response that everyone would be happy with.
I think your idea of responding with a question of something like "how are you doing with that" is about as safe as you can get, and I mean that in a good way.
I think the "how to respond" is a good question, and one I've even had a hard time with. My wheelchair seems to invite strangers to come talk to me. I've had many strangers feel the need to tell me, "My nephew's in a wheelchair too." And I never know what response they're looking for... I'm sorry? Congratulations? Hey, cool, we should be friends? Awkward... Now, other times, the nephew comment is then followed by a more specific comment or question, wondering if I have experience or advice on a particular issue. And that, I'm just fine with.
I like the "how are you doing with that?" approach. It invited much more real conversation and connection than any prepared sentiments.
I think the "my nephew uses a wheelchair" people are trying to say that they have some experience with disability, and that they "get it." Or at least are trying to "get it." It does seem awkward unless there's specific questions or something following!
I don't want to be a walking example most of the time but under certain circumstances, it's okay. Especially when a parent whose child has something like mine is involved; I am more than happy to provide reassurance and, to the best of my ability, information. This is rare but has happened.
I very much like the "and how's that going for you?" approach. It doesn't imply that disability is something awful nor does it put the person on that ghastly pedestal by making them out to be some sort of "hero" by learning to use the chair or raising that child or whatever.
"Words that weild off pity and sad smiles and seeing 'thank god I'm not you' in small print at the back of someone's eyes."
What a fantastic way of saying that!
As a parent of children with disabilities, I've never found the words to prevent the pity response. It happens or it doesn't. I respond accordingly.
If I get an "I'm so sorry to hear that;" then I respond with, "I'm not sorry--I love my boys just the way they are. They're awesome!"
Sometimes I think the only way to get people to re-think their assumption is to startle them.
When my daughter was born we presented Ds in such a way that it was there, but not a big deal. We introduced her as our beautiful brown haired, blue eyed girl who just happened to have an extra chromosome. And we got the reaction I'd been hoping for, lots of congratulations.
It seems to be the situations where I'm not as prepared to tell someone that she has Ds that seem to bring on the pity. I have no problem telling others, it usually seems that others don't know how to react, and thats what can be uncomfortable. The reaction I'd like to get is that they ask what my girl is up to these days, just as they would ask about anyone else's kid thay hadn't seen in a while.
Funny that you should equate 'coming out' as disabled to 'coming out' as gay. Because since my daughter was born with Down Syndrome,I have learned a lot more about the attitudes that are disabling to all who are considered 'different'. My attitudes towards those fighting for gay rights has changed from indifference to an understanding of the hurt that is inflicted by others.
In answer to the 'how do I approach this' question, I got pro-active and stared a Cafe Press store (www.cafepress.com.au/justjuniors) selling tee's etc that are pretty 'in your face' about disability. Things like "somebody I love got an extra chromosome and all I got was this lousy t-shirt", "My mummy says that having an extra chromosome means there is more of me to love", "Some angels have wings, and some angels have wheels" etc. I find many people are so scared of causing offence that they cause offence by their silence. By being upfront about disability, I am inviting people to ask questions. To learn more. And to understand that I am so proud of my little girl, that I am advertising her!
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