I've been fortunate to never resent the wheelchair, itself. Maybe my positive outlook toward
the wheels beneath me stems from the fact that I always recognized that a wheelchair is simply a tool
of liberation, or maybe it stems from my overall optimism and sense of appreciation for whatever life
blesses me with, cerebral palsy and wheelchair included.|
However, others aren't so fortunate
they, for a number of reasons, resent the wheelchair to the point that it consumes their lives, taking
a devastating toll. And, the more I understand the depth of others' resentment toward the wheelchair,
the more I believe we need to do a far better job addressing it as a community, where it effects many,
not just the individual.
The initial causation of wheelchair resentment by those with disabilities
is easy to understand. Arguably, the most real, tangible part of disability is the wheelchair. It's physical,
it's touchable, it connotes a never-ending legacy of limitations and negative stigmas. For example, beyond
a few physical symptoms, you can't see a spinal cord injury. But, the needed wheelchair is an unmistakable
icon that one is paralyzed. And, so, in a very obvious way, some with disabilities see their wheelchair
as the ultimate evil the literal manifestation of their disabilities. An acquaintance who went through
such a resentful stage, then moved beyond it, once told me, In my mind, my injury was the wheelchair's
fault. I didn't use a wheelchair because I had a disability. I had a disability because I used a wheelchair.
And, so a transference process occurs, where all of one's negative emotions toward disability are
thrust upon the most obvious culprit in the room: The wheelchair.
Yet, it all runs deeper than
that, much deeper deeper than disability experience, truly delving into more innate human experience.
It's said that when it comes to traumatic experiences and, for many, disability stems from, and is,
a traumatic experience we're oddly attracted to reliving the trauma over and over, doing whatever it
takes to hold on to the pain. Some psychology theories say that it's a way of trying to change the unchangeable,
so we recreate scenarios to keep the pain alive in hopes to alter the outcome; others say it's a way
of trying to control that which we couldn't control; and yet others say that when distress is what we
know, it's all that we know, unable to move beyond it.
However, where the real mystery remains,
is that this common attraction to relive trauma is completely counter intuitive, moving from what one
would presume of a survival instinct to go in the opposite direction of harm, and instead continuing
to run toward it in a self-destructive way: You'd think that molestation victims would seek only the
safest, healthiest relationships, but it's estimated that virtually all women in the sex industry were
victims of molestation. You'd think that growing up with alcoholic parents would cause one never to drink,
but virtually all alcoholics and those married to alcoholics come from parents who were alcoholics.
You would think that those who suffered abuse would avoid abusive relationships at all costs, but virtually
all who are in abusive relationships have histories of being abused. And, you would think that having
a disability would increase one's appreciation for life, but many simply dwell on the terrible aspects.
And, so there's something about the human psyche that forms a fixation on that which harms us most, creating
a destructive attraction to trauma and pain.
And, make no mistake, many simply can't stop dwelling
on the wheelchair as the negative focus of their lives. It's the trauma of disability not just projected
upon the wheelchair, but actually relived through it over and over, to the point of destructive attraction.
There's a self-destructive satisfaction in finding and dwelling upon a wheelchair's faults. In the most
severe pathology, there's absolutely nothing wrong with the wheelchair, but beyond all of the good in
their lives, some spend day after day literally looking for issues with the wheelchair, sources of anxiety
and pain a way of maintaining the trauma in their lives. If they can simply find fault with the wheelchair,
it feeds their trauma, the result that they crave.
Unfortunately, as those who work in the mobility
industry including those of us with disabilities, ourselves we're not professionally equipped to
address trauma-based pathology. I mean, the ATP exam covers a lot of aspects of assistive technology
applications, but there's no discussions of compulsive re-enactment or post-traumatic stress disorder.
We know how to fix a broken power chair; we don't know how to fix a trauma-based personality.
when mobility professionals encounter someone who's dwelling on a wheelchair to an unhealthy degree,
they often don't recognize it or know how to address it. It begins with an earnest attempt to address
the literal wheelchair. But, after countless efforts, where the consumer is never satisfied, it ends
in frustration: No matter what I do, I can't satisfy this consumer I don't get it?
we realize it's not the wheelchair that's the issue, but the consumer's resentment toward the wheelchair,
it's heart breaking. To see someone emotionally fight having to use a wheelchair is painful to witness,
especially when you see it go on indefinitely, and know of the toll it takes on the individual and family.
I had a wife pull me aside and say, My husband has gone through four new power chairs in one year, and
none are right for him it's destroying our life. Can you help?
In following up with the provider,
he shared with me the models and what he'd done for the client, noting, He has better insurance than
most, and the manufacturers have all taken back the chairs at their expense, but there doesn't seem to
be a chair on Earth to satisfy the guy.
Of course there wasn't. What the loving wife and well-meaning
provider didn't grasp was that the gentleman would find fault with every power chair, namely because
specific wheelchairs weren't the issue. Rather, the gentleman was simply re-enacting the trauma of his
disability by finding faults in every wheelchair, pointing out how they were ruining his life. See, accepting
a wheelchair would force him to move on in positive directions. But, by finding fault in every wheelchair,
he could engage in that weird space that psychologists call compulsive re-enactment, holding on to the
trauma, living it over and over.
For me, it's a harrowing predicament to witness every time I
encounter it. With a lifetime of disability experience and 15 years working in virtually every aspect
of the mobility field, having personally worked with thousands of wheelchair users, I can quickly assess
situations where I see it's not about technology but trauma. And, in fact, consumers will sometimes try
to use me as part of the cycle, emailing me every day (to the tune of hundreds of ultimate emails from
single individuals), even though there's no problem, striving to keep the what-ifs, maybes, and could-happens
going that is, striving to stay in the trauma zone by conjuring bad scenarios surrounding their wheelchairs.
And, I strive to help reassure them as professionally as possible that everything is OK.
on the other hand, as they say in recovery circles, I get to a point where their behavior is so blatantly
unhealthy that I want to call them on their stuff, and say, You're pain is overwhelming to even me.
When are you going to stop focusing on your wheelchair, and start living? Can we talk about what's really
going on here?
Indeed, it's a vital conversation that's nowhere found in the mobility or rehab
industries. No one comes right out and asks, Can we talk about what's really going on here because my
concern is that the wheelchair isn't the issue, but your pain surrounding it is....
power chairs and hundreds of emails, I asked one individual as sincerely as possible about how he was
feeling about his disability, regardless of his wheelchair?
This has nothing to due with disability!
he screamed over the phone. It's only about all of you stupid people and your stupid wheelchairs that
have ruined my life since the day I was injured!
Exactly, I thought we were finally getting
Sometimes working in the wheelchair industry isn't about mobilizing the body, but healing
Published 6/2012, Copyright 2012, WheelchairJunkie.com