Confession: I found it, oddly, very difficult to write about my feet, the shoes, and my need for help getting dressed.
I thought about why this might be, after all I write about a lot of personal things here, and decided that it's probably because I mostly write about the social aspects of disability, not the physical aspects. And when I do write about the physical aspects, it's mostly about accessibility in terms of grab bars and tall toilets - discussing locations more than limitations. So, as I wrote about my feet, the shoes and the help I need, I felt kind of exposed. The discomfort that I experienced had me shifting around bits and pieces of furniture that's stored in my memory and I remembered something. Something long forgotten, now incredibly vivid.
Long before I became disabled and maybe a couple years before Joe started travelling with me full time, I was making a trip on my own to give both a keynote and a workshop at a small regional conference. A day or two before I had fallen and had really hurt my back. I was having trouble with getting my right foot dressed - sock AND shoe were a problem. I managed, but painfully, to do so. Joe and I talked about maybe me cancelling my flight and the gig because, without him there, I might not be able to get dressed in the morning. It was a chance.
In the end I decided not to cancel and to make the trip. I joked to Joe about how lucky I was to work in the disability field. If I can't get either my sock or my shoe on, I'd simply ask someone to help me. The organising committee all were direct care workers and they all seemed incredibly caring and wonderful to deal with. Surely one of them would be OK with helping. All my life I've lived with naivete as a lodger in the part of my brain that forms my world view.
So, I landed and was met by a group of three people. We shook hands, they all told me how excited they were that I was there and that they were going to hear me present. Lovely. Really lovely. On the car ride from the airport I mentioned that I had hurt my back and had briefly considered cancelling. I have learned, from experience, that you only mention this kind of thing once there. Then I remarked that I might need help in the morning if I couldn't get either my sock or my shoe on.
Suddenly the atmosphere changed in the car.
Yikes.
I made a mistake.
It was a really, really, really, and I should say REALLY, big deal.
Then I began to sputter that most probably it would all be OK in the morning. And it was. As I walked from breakfast to the lecture hall with the one fellow who was on the committee he confessed to me that he'd had difficulty sleeping the night before because he was so anxious about having to help me in the morning if I needed it. I asked him if he'd ever assisted someone with a disability in his care with dressing, he told me he had, 'all the time.'
But this was very different for him. And, I learned, it was very different for all of them on the committee. It seemed that in helping someone with an intellectual disability they felt elevated by the job, by helping someone they saw as 'important' they felt that doing the same thing would lessen them.
I was disturbed then, and am disturbed now as I write this, that the view of intellectual disability that is the subtext of what was being said was that they were 'lesser' so that helping them dress simply emphasized the ability and the value of the helper. Helping me was different, the difference between serving and being a servant I guess. Yikes. In fact, double yikes.
All these years later, I find it very hard to ask someone for help - and I wonder if this early experience had a more profound effect on me than I might have thought.
I don't know.
But I guess this is why I write. Telling you about my new slippers, and telling you about Joe and I putting on each others shoes, shook loose something that I needed to think about. And though, this blog is now nearly done, my thinking about this has only just begun.
10 comments:
Dave,
there is so much I want to write now!! But first I have to sort all my thoughts. I hope I will be able to write a full comment to this post soon.
Julia
I'm glad you wrote this blog... The last two entries stood out to me too. I read them both and thought they seemed more vulnerable than usual, and wasn't sure I'd have the courage to share them if I were you. I talk about disability all the time, yet I'm still very uncomfortable talking about things I can't do.
And, specifically, there's something extra vulnerable, I feel, about feet.... I'm thinking of how I quit wearing sandals many years ago, because I was tired of people staring at, commenting on, and gasping in shock at the purplish color my feet often get. (I've known how to explain "low circulation" since I was a very little kid.) I'm thinking of a personal essay I read as a teenager, written by a woman with my same disability, about her feet, and how she would never take her shoes off and let people see them. She wrote about meeting the man she'd later marry, and about how she'd resisted when he offered her a foot massage. She wrote about his gentle insistence, about the great leap of trust it required to let him past her shoe barrier, and about the loving, intimate way he handled her feet. As an insecure teenager, the simple love story touched me deeply, and it still comes to my mind frequently.
I'm thinking about the New Testament stories. The one where the woman washes the Savior's feet. The one where Christ washes the apostles' feet.
I feel like there are powerful connections to be made and messages to be gleaned. I have a hard time putting them into words though.
What an interesting observation on your part. I found the committee's response odd - and I'm sure it would "leave a mark". After all help is help. We ALL need help in one form or another. We shouldn't think of people lesser than ourselves, especially in the service of others. And are we not all in the service of others?
I love the picture that kristine reminded us of - of the Lord taking a towel, kneeling down and washing the dusty feet of His disciples. Humility in action - but also helping. We do well to follow His example.
I'm not disagreeing with you, Dave, or defending a questionable attitude. I'm just writing what my thoughts are.
When I have helped my husband with personal care after a back injury, and when I have helped my children with the nitty gritty things in the normal course of being a mother, I have considered it to be an act of love. My husband's time of great need actually strengthened our marriage.
I wonder if the discomfort on the part of the committee members was in any part from a feeling that this was an act of intimacy. I know that's not what they said, so it's probably not the case. But if I were asked to help this way, I believe I would do so, but it would feel very personal. Remember, however, I do not work in the field that they did.
As for feet being vulnerable, I remember a few years after my mom died I watched a peer of mine stop to tie her mother's shoes. I was filled with envy and longing for my own mother. I saw it as an act of love that I could not perform for my own mother. And Jesus washing the apostles' feet has always moved me. I guess I have a foot thing!
Ugh! and don't I know it!
I have physical and cognitive disabilities. Not only do the impact of my disabilities vary day to day, but my cognitive abilities are much more mixed than most. I can't say I have intellectual disabilities because, where I am, that's defined purely by IQ, a number less than where I fall. Except... my neuropsych test results are strange ones: most results are higher than the 85th percentile (many >99), but a quarter or so are below the 15 percentile (a few <2). So depending on the day and the task, I can appear cognitively average, even brilliant... or severely cognitively disabled. There's really no in between for me.
How people treat me, the level of respect I get, varies almost incredibly based on how I'm doing at the moment they meet me. I totally understand the atmosphere suddenly changing. Harder times or more difficult tasks, often their words slow and they start speaking as is common to toddlers, taking on that saccharine tone. The other common response is their tone becoming hostile, as if to say, "People like you shouldn't be out [alone]!" Either way, after their tones change, it's very unlikely anything I say will be heard. I'm sure the sweet-toned ones would dispute they think lesser of me, but they barely take more note of my words. And it's pretty rare for a (relative) stranger not to change their tone when I'm obviously having cognitive trouble.
It can be amazing, the first time someone witnesses me starting to have cognitive trouble. Generally they'll be talking a bit too fast for me to process or else asking a "simple" question that my mind has a hard time answering. Like you said, the atmosphere suddenly changes. In an instant, everything is different. Now, I'm one of them. Some simply can't believe it; they think I must be joking, putting one over on them. Others are taken aback that they didn't realize before (though there was no hint earlier). A few become very hostile, apparently figuring that if I have such trouble, I must have been lying to them before -- how dare one that has trouble such as I do pretend to be a "normal" person like them! There's always some reaction, a moment of re-evaluation. I can understand that. After all, 99th to 5th percentile is a big jump. But the re-evaluation almost always ends in me losing social stature, me being thought of as having less worth than before. There's no good reason for that.
Do I really lose worth as a person if I can't answer a question? I wonder how the heck, really, do these people judge worth. What exactly are the criteria? My guess is most haven't really thought about it. Maybe they'd act differently if they did. But I know of one person (that I respected) who thinks brain damage inherently makes one lesser (not lesser as a person, they say, but lesser -- as if that makes any sense). Yes, they said Gabriel Giffords is lesser now. Wow. I'm not up for people with disabilities being inherently brave or inspiring, but "lesser"? Really?! Wow. But I've got to figure a number of people think that if only because that act as if that's so. Sad thing, that.
I live alone. I've lived alone for most of the past 3 decades. I have problems like this.
What really drives me nuts is when people with significant others act like my having problems dressing myself is a pile of bullshit. It's kinda like the 'handicapped accessible' places that have one little step going to the door -- able people get used to the little things that they stop noticing the problems.
When there's almost always someone there to help you put a shoe on, or pick up the pants you dropped, or help you get up when you fall over, you forget that these things are frustrating on a good day when you're alone.
I've often in my life gotten crap about stuff on the floor. Well, geez, if I can't randomly pick things up off the floor, it's not going to suddenly start levitating. If I drop something, nine times out of ten it's going to stay there until I can find a way to get it (if I am perhaps at home and have access to a way to grab it) or someone else gets it.
People think I'm just lazy, and if I ask for help I'm super lazy.
Dear Dave it would be an honour to assist you with putting on socks and shoes should the need and occasion arise.
Just a hunch, but I wonder about the gender and cultural identification of the individuals on the welcoming committee?
I think I was brought up to understand opportunities to serve as a privilege and honour, be it from a position of privilege or assisting someone of more elevated status than my own.
I wonder if it’s particularly hard for some men (and maybe some women) from certain backgrounds to offer service because they are brought up to view serving roles with disdain?
I also think it’s deeply shaming to the asker of assistance if the person ask balks at the thought of offering assistance. I have sympathy for those who find it hard, but if you think it’s ok let the asker see that- how rude!
I’ve never worked with people with major intellectual disabilities but I worked for many years for people with physical disabilities.
I am used to giving people a hand with a wide range of things and can offer assistance in a professional manner even to those who aren’t my boss, for instance to a friend or relative or a random person who might need a hand with something, able-bodied or not. I am positive I would have not have experienced the reflex that your organizing committee had.
I suspect the difference is that I was taught to provide services by and to my employers. There was no third party. I had little occasion to meet other service providers. My employers were “us,” I was “them.”
If my employer had been an entity consisting of able-bodied people, my attitude towards my employer’s clientele might have developed differently.
This brings up a lot of emotions for me. I'm ashamed to say that I might have been uncomfortable with your request, too. And on thinking about it, I really don't have a good reason to be.
I think part of it is a difference between assisting someone with a physical disability versus assisting someone with a cognitive disability (or both cognitive and physical disabilities). Most of the people I've volunteered with who need help getting dressed are not people I can converse with about ideas. Either they are nonverbal, or have significantly delayed speech - which isn't surprising since many cognitively disabled people have equal delays in all areas.
Which means, for me, that they won't comment on what I'm doing. They won't judge me if I do it 'wrong'. (Or at least I won't know they're judging me.) They won't feel embarrassed about the situation.
Normally, I'd never consider dressing or undressing an adult stranger, but if my help was needed it would not be that strange to me to help an unfamiliar preschooler or toddler. I know it sounds bad, but I tend to relate to people with severe cognitive disabilities as if they were small children, mainly because they act a lot like small children and have similar needs. Whereas a physically disabled person may have physical care needs that are similar to a small child, while being able to converse and interact on an adult level.
I suspect if you'd been presenting at a conference focused on people with purely physical disabilities, the care providers would not have reacted that way. They'd already be used to helping someone who can talk to them.
And I know this doesn't *have* to be such a big deal. My two best friends have CP, and they don't see a big deal in receiving or providing physical care. Once, at a birthday party, we had another of their friends over who has no hand use, and I was amazed by how casually one of my friends fed her. It really was no big deal. I guess this sounds nerdy, but it reminded me of how Teen Titans react to the fact that three of the Titans can fly and two cannot. They don't make a big deal out of needing to carry the non-flyers.
Dave - are you sure that's what they felt? You were there and I wasn't, and I ask this as a genuine question.
It's just that, had I been in the same situation, my change in atmosphere - yes, I'm sorry, there would still have been one - would have been about 'OMG this really important person that I admire might need my help. What if I do it wrong?!'
I have enough experience of people with an intellectual disability to trust that if I do my best but make a mistake, they will respond with generosity and understanding. I don't have enough experience of helping important people to know how this would be.
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