"The
Temporarily Able-Bodied"
by Laurie Thomas and Rev. Kimi Riegel
April 4, 2004
Laurie: How long have we been working on this friendship thing?
Kimi: I guess it’s been about three years give or take a few months. I
sure have learned a lot from you. I know sometimes it must get to be a drag
always being the one to have to educate me but I appreciate it.
Laurie: I have learned a few things from you too and I treasure among my
most precious gifts the friendship you and I are making. That's probably a
little two mushy to say to you in public, given your staunch
Kimi: Thanks. Yeah I remember that handholding thing you guys do in
Laurie: I remember a warm September day when you and I met in the front
yard of the
Kimi: Temporarily Able Bodied. That’s me!
Laurie: It really feels different for someone, like me, from one of the
traditionally marginalized groups - it feels good once in a while to do the name
calling instead of having it aimed at me.
Kimi: Yeah Language was one of the first things you taught me. I figure
now most of the time if I start to identify a person and remember to use the
word person first I avoid most of the pitfalls.
Laurie: Saying, “a person with a disability” or a “person who uses
a wheelchair” puts the person part first. I
am a person who happens to have a characteristic: cerebral palsy.
Kimi: Why don’t we use handicapped anymore? Why don’t we say “a
person with a handicap?” That seems to get away from the picture of incapacity
and inability I hear using disabled?
Laurie: The word “handicapped” has a sorry history. The word conjures
up images of someone with a cap in his hand begging for alms. Give more details
of the history of the word – was it really for people who stood on the corners
begging?
Kimi: We liberals are certainly trying hard to get over our isms. Ableism,
the reality that world is build for those of us who can see, hear, smell and
walk, that it excludes to a large degree anyone with a difference, seems easy
enough to eliminate. We need to be inclusive of everyone that’s simple. It’s
in the actions that we get tangled. Words are the first place to trip up, the
first place to build awareness, but there are so many other pieces.
Laurie: I like to talk about power and the imbalance of it. By power I
mean political and economic power. If the dominant culture really is committed
to handing over power, it should expect to be invaded by historically
marginalized folks of all kinds -I mean everywhere, like in your churches, your
workplaces, and even your neighborhoods. Invasion may mean things like including
people with disabilities on your boards and committees. And yes, you are going
to have to spend real money on making your buildings accessible. It means
putting in sound systems, paying for elevators, bathrooms, sign language
interpreters, and large print as well as Braille hymnals. Its means listening
then changing the way we run meetings, eat and even talk with one another. Its
that change thing and its uncomfortable.
Kimi: We have been lucky here. We have only one floor so our biggest
expense so far has been the bathroom. We have sign language once a month and
large print hymnals and orders of service. And we have a great new sound system.
The money came from some forward thinking folks years ago who put rental money
into a fund to improve the building. We are very proud of our accessible
bathroom! We still need to get automatic door openers, a system for people need
more hearing amplification than we have, and Braille hymnals. It seems like its
an ever growing project.
Laurie: Accessibility is achieved by taking small steps. Folks in
churches focus on the big-ticket items like elevators and automatic doors. They
take a look at their budget or their building, their eyes glaze over and they
give up on accessibility. My advice: focus on some small things, some do-able
goals. But alas, this is architectural stuff. I think disability raises deeper
questions of what we value.
Kimi: yes, there are the really hard questions like those proposed in the
article from The New York Times.
Laurie: The article that you mention appeared a little over a year ago.
It was written by Harriet McBryde, a disability rights lawyer, and herself a
person with a significant disability, has been invited to have a debate with
Peter Singer of
Kimi: I found it profoundly unsettling to read about killing babies that
are born with disabilities knowing that I have been in the position of making
that decision myself. I’ve had the amniocentesis tests. I am pro choice. I
support the right to die. As Ms. Johnson states in the article, when a disabled
person is born, who gets to make the decision about quality of life. And whose
quality of life?
When I was quite young I remember friends of the family had a little girl who
was about my age. She was a lot like me in fact, dark hair and dark eyes. The
big difference was she was only able to turn her head. I remember watching with
curiosity and awe as her mother changed her diaper. She was just learning to
smile shortly before she died at age 13. Her parents took great care of her. She
went to school on the bus everyday and came home to be cared for by her parents.
There was certainly no feeling of pity on my part and no feeling of hardship
that I remember. Robin’s life was just very different.
Laurie: The thing I like about the McBryde article is how intertwined the
Singer/ McBryde debate about the quality of life is with the all too
“normal” details of her life as a person with a disability. By the way,
did you know the "normal" only belongs on washing machines panels...
that there is no such territory as "normal? In other words lets not use the
word normal to describe people. McBryde describes common, ordinary details like
airplanes screwing up wheelchairs and scooters on a regular basis, like the
scene in the bathroom where her personal assistant uses the baby-changing table.
Can you picture that? For her that is normal.
Quality of life issues are what the knee jerk liberals don't get. People tend to
focus on costs, anticipated hardships. The assumptions or predictions about my
quality of life could never have be made by my parents at my birth. My
"quality of life" was in process. I don't want to say that's true
across the board, but who does get to make those incredibly complex decisions?
Whenever I talk about disability in my life, I say that I do not consider
disability a tragedy, like the dominant culture does. It is what it is. Let's
place no judgment on it. Our culture considers disability, especially acquiring
a disability, a fate worse than death. It is a naturally occurring phenomenon,
happens in the plant and animal kingdom with regularity. Going down the tragedy
trajectory will only end up in pity.
Kimi: We certainly have been well trained in the pity mode. We are taught
to feel sorry for all creatures that are fated to a disability. I mean our
friendship is based to some degree on my wanting to be helpful.
Laurie That’s where the mutuality comes in. We, most of us, crave
mutuality. People with disabilities frequently find themselves on the receiving
side of relationships. We are the ones who need rides, who need the walk
shoveled, who need help with feeding, who need help navigating. But we are also
people who crave mutuality in our relations. So the stance of a welcoming
community ought to be: how can this person help with carrying out our mission?
Or what gifts does this person bring to us that we might use? The gifts may have
nothing to do with his/her disability. He/she may be an excellent cook or an
excellent organizer. I bring authentic friendship into the picture today because
the welcoming of people with disabilities goes both ways. I believe that in
community we need to nurture authentic relationships with all kinds of people.
Kimi: Thus I can be grateful for your patience and listening ear. You
offer me someone who is a colleague, so a minister, yet someone who is not mired
in the politics of a particular church. We share interests and even personality
tendencies so there is a connection that is genuine. I especially appreciate
your honesty.
Laurie: speaking of honesty can we talk about bodies? We live in a
culture obsessed with bodies; how bodies look, how they move or don’t. Some of
us go to extraordinary lengths to pamper our bodies. Others of us take great
pains in disguising the marks of aging. Our young people have unrealistic body
images, resulting in almost epidemic rates of eating disorders. So bodies are a
big deal.
Kimi: No kidding. From a very early age we are prone to stare at things
that are out of our realm of experience. Because people with disabilities are
often tucked out of the way we find their difference a curiosity. Such words as
limited, afflicted, incomplete come to mind when we think of the bodies of
people with disabilities. They are missing something we feel is necessary for a
full, complete life. Fortunately for us you are a part of our life and the
experiences of my children. When
Laurie: When those of us who inhabit very different bodies enter the
mainstream, all kinds of shifts occur – the economic shift that we mentioned
before. Then there’s the shift in attitudes, in the mindset, in the heart,
which is very slow in coming. It starts with language. But it requires vigilance
on your part, to check your assumptions, to recognize you are able bodied and
thus have economic privilege.
Kimi: I found the image of a mountain in Eli Clare’s book Exile and
Pride very helpful. The mountain summit that I stand on in terms of access
because of my class, temporarily able body and race is built on assumptions.
Assumptions of quality of life, intelligence, work ethic, looks, exclusivity and
so much more. As Ms. Clare describes it the climb up the mountain is booby
trapped and lonely. Those with disabilities that “make it” are considered
the super heroes when in fact it’s a very lonely place. I am learning that no
one wants to be a super hero for just living his or her life. She describes the
difference between impairment, something I experience because I can’t smell
anymore and a disability, how the world prevents people with impairments from
access to care and employment.
Laurie: Yes Eli Clare is a friend of mine. That first chapter of her book
that you refer to was for me, a most powerful and moving description of what it
means to move in the world with a disability. I saw myself and others close to
me in Eli’s description of the super gimp and the journey up the mountain.
Kimi: Moving in the world with a disability seems to have gotten a tiny
bit easier thanks to the efforts of the Disability Rights movement.
Laurie: Yes, the Disability Rights Movement was born in the wake of
earlier struggles – Civil Rights, Feminism,
Kimi: Yes each of these movements has given all of us an greater
opportunity to move out of our boxes. Feminism has brought changes for men too
that increase their freedom say, of expression and child rearing. Anti racist
movements have given us access to our own heritages and the beauty of cultural
diversity to name just a few things. Queer liberation has given us greater
access to a healthier sexuality. Dismantling ableism will certainly bring gifts
to our society beyond just more access for everyone.
Laurie: As to the gifts, which come from disability liberation, there is
a different pace of life, an appreciation for gallows humor and a different spin
on the notion of perfection that we bring to the culture. But wait a minute! You
mentioned dismantling ableism. I’m not sure we ever “dismantle” ableism,
just like we don’t ever dismantle racism. Dismantling oppression of any kind
takes a lifetime commitment and eagerness to grow, learn, and be changed.
Blessed Be