When I started researching my discomfort with disabilities, my approach was laden with assumptions, stereotypes and prejudices.
As I waded through texts on disability studies, I began to realize the complexity and depth of the issues involved. But it was meeting and talking with people that brought the issues to life. Books analyzed the schism between the worlds of the disabled and the non-disabled; human beings illustrated that divide – and also showed me how it could be crossed.
Although I still haven’t overcome my deep-rooted fear of confronting disability in myself or a loved one some day, I have come to appreciate and understand that disabled people have lives whose quality should not be judged by those of us who have never experienced disability first-hand.
It was not easy to open up to those I regarded (at least subconsciously) as lesser than me because of their disabilities and my so-called abilities.
But by the end of the process, they had helped me learn more about myself than I ever imagined.
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The day I first met Nancy
When I spoke with Nancy the first time, I wondered what I had gotten myself into.
Through her email I knew she’d had a stroke. Since I had recently written a piece on another woman paralyzed by a stroke, I thought meeting her would be no big deal.
But when I heard her on the phone, I knew this was going to be different.
I could not understand what this woman was saying. Not that she was incoherent, or vague, or confused – just that her speech was significantly impaired.
She told me she stayed at XXX Griffin Road; when I looked up the directions online I found nothing like Griffin Road in Iowa City.
The telephone directory was more helpful – she had told me to come to “Glendale” Road.
As I navigated icy sidewalks in a part of Iowa City I had never visited, I rued that I didn’t have a car so I could drive to places the bus did not go. I also ruminated over why people put houses in such inaccessible places. Why couldn’t they just live somewhere closer to public transport?
If, as an able-bodied 25-year-old in good health, I had problems reaching this isolated place, what about someone whose limbs did not function properly and who was incapable of driving? Simply stupid to live out here, I reasoned.
Finally reaching the rust colored, brown roofed bungalow, I rang the bell, took off my cap and gloves and waited.
About a minute later I heard a thumping sound – like someone slowly pounding a door. I thought it must be her dog – a big one at that, but no, this didn’t sound like a dog running about the house; it was slower, louder than the sound a dog’s paws would make and, well, just heavier.
In fact, it was Nancy in her wheelchair.
A 48-year-old with curly white overgrown unkempt hair, big thick glasses and a smile.
Nancy was nowhere close to what I had imagined.
I had seen women in wheelchairs downtown, but they were almost always in electric ones that moved quickly, smoothly and quietly. They were also older, skinnier, and in most cases well groomed.
Was I stereotyping all people who use wheelchairs? I guess unconsciously I was.
I would learn slowly, through more and more interactions with the disabled, that they are just like all of us non-disabled people – a heterogeneous group with individual differences.
But that was to come later.
For now, Nancy was the focus of my unwavering attention.
I hope I didn’t make her feel like I was staring at her.
At least I tried not to. But I remember looking at her eyes a lot, and looking down at my blank notebook a lot, too.
I did not have the courage to look at her wheelchair.
Maybe because I was scared of the kind of look I would give it.
And, honestly, I did not know what my eyes would have conveyed – pity, perhaps; intrigue, maybe; sadness, certainly.
I was normal, and I didn’t want to show it off.
As we shook hands, both our left ones, I became aware of her paralysis.
Her right side was dysfunctional to a certain extent, it seemed. How sad, I thought.
After hanging my jacket in the living room closet as Nancy directed, I made myself comfortable on the couch. I could hear the television from inside, or maybe it was the radio.
As we started talking, I tried not to raise my voice or talk extra slow – I knew because of our phone conversation that Nancy could hear just fine and as far as I knew, her mental faculties had not been affected by the stroke, so she could comprehend me.
But simply being so conscious of the things I had to be careful about made me feel awkward. It wasn’t
a normal interaction.
Usually I let my interviewee speak a lot while I just listen or make comments, steering the conversation a particular way. With Nancy, however, I found myself talking a great deal.
I told her about my project, the reason why I was doing it, about my family, my cultural background, my likes and dislikes and probably a lot of other things that weren’t relevant.
I did not want to let her talk because it almost felt like I was putting her through a lot of difficulty.
Nancy takes time to talk, and you really have to listen carefully to understand what she is saying. It seems painful for her, even if it’s not.
A sentence that might take me a minute to say takes Nancy two or three. It is tempting to complete her sentences for her, to just cut her off in the middle and fill in the rest – rude, but tempting.
But since I’d come to interview her, in time I began to relax and let her do the talking.
Even in our first meeting Nancy came across as gentle, witty, and intelligent.
She talked about her student life in Georgia and her summer adventures in Italy. She recounted meeting her husband and laughed about the puritanical Midwest. She also told me about how the stroke happened – although we never got into details about that mostly because I felt uncomfortable asking specific questions.
How do you ask someone what it felt like to go through such an experience? How do you ask how horrible it was to lose a baby and wake up paralyzed? How do you ask a professional painter how she feels about not even being able to hold her paintbrush anymore? How do you even begin asking about the frustration, the anger, the helplessness? How do you ask without causing any pain?
I couldn’t bring myself to do that. It just didn’t seem appropriate.
It was too close to home for her, and the last thing I wanted was to look at her with pity eyes. I knew I would not be able to hide it.
And I didn’t want Nancy to see that.
As soon as I left her house I exhaled – deeply.
I called my then-fiancé-now-husband in California. “I feel like crying,” I told him.
“Why didn’t she die? What’s her life worth now? What must she feel every morning when she gets up, every night when she sleeps?”
He very calmly said, “She’s just a little different. And she is not suffering, she’s fighting back; she should be respected for it, not pitied.”
Wise words. But he hadn’t seen her. I had, and I felt sorry for her.
I felt sad for the things she was missing in life. I felt horrid about her having to live that life every day. She was entitled to a normal life, wasn’t she?
At that stage I’d completely overlooked the sense of humor, the sparkle in her eyes, the endearing voice, the witty repertoire – all I saw was the helplessness, the dependence, the disability.
It took me two more meetings with Nancy to realize that she had a life, and a very busy one at that. And that she was a very strong person, even stronger than we “normal” people.
She must face stereotypical attitudes like mine every day, but she doesn’t let that bog her down.
She knows people run out of patience and don’t understand her speech very well, but she doesn’t let that stop her from expressing her views.
She understands her limitations, but she doesn’t let them restrict her from doing as much as she can.
Nancy has helped me understand there’s much more to life than being able to do “everything.”
She’s also made me realize that you can’t plan everything. Some things happen unexpectedly and you just have to adapt and make the best of the situation.
Sometimes you have to learn how to survive all over again. And if you try, you can do a pretty good job.
—————-
The complexity called Bette
After talking with Bette over the phone, I had a mental picture of a tall, sophisticated, confident woman – all attributes of a successful person.
After all, she was a singer and songwriter, a registered nurse, a mother of three, and a music therapy student. So what if she had diabetes? That did not keep her from an active lifestyle.
I’d emailed her my photograph so she’d recognize me at our first meeting.
As I entered the downtown Java House, I looked around and was sure I’d found the woman I was scouting for: elegant, energetic, and well-groomed – she fit the bill perfectly.
As we stood in the queue making our coffee selections, she turned, looked at me and smiled. I smiled back but was hesitant to ask her if she was Bette.
Well, she had seen my picture, so maybe she was just taking some time to introduce herself. As she ordered her Sugar Daddy Latte with an extra shot of espresso and a big banana chip muffin, I decided upon my cup of brewed coffee of the day.
Her order, perhaps a little indulgent for a diabetic, did not seem odd to me.
I looked for a place to sit by the window and expected her to follow me, but she did not. I guessed she needed more time. I did not even feel the need to go ask her if she indeed was Bette because I was so sure she was.
As I settled down, a moderately fat, short woman, whose head was vibrating slightly, came up and, just as I was going to tell her the seat next to me was taken, asked softly, “Are you Mensye?”
“Mansi,” I said and extended my hand instinctively. “
Hi, I am Bette Rod – you must have been looking for me.”
I probably kept my smile intact and murmured something about how crowded it was.
Once again, I’d let myself fall into the trap of stereotypes.
I had known only one diabetic – my grandfather, and he was tall, lanky and active, with not much interest in food.
Bette instantly defied that image.
She was a little pudgy – she held a big cup of café mocha she was relishing and seemed slow and deliberate in her movements.
While earlier I’d had no problems with the sophisticated stranger’s order, Bette’s self-pampering disturbed me.
And she didn’t look as cheerful as I’d imagined. She should have been, for diabetes is “fixable.”
An hour and a half later I realized how wrong I was.
Bette was depressed – upset with what life had handed her. She was not at all comfortable dealing with her condition and made no pretences of being brave. She simply wasn’t.
It was a daily battle she was fighting because she had no other choice.
She also worried about people learning of her diabetes. She did not want to be labeled, and still less be associated with “those” disabled people.
She sympathized with them, but refused to identify with them.
When I told her about Nancy so fully living her life despite the circumstances, Bette looked out the window and asked, “Do you think she has adapted herself to this life?”
And without waiting for me to respond, she added, “She hasn’t. She just tries to be brave. Call her at two in the morning when she is not being able to sleep and then ask her, how do you really feel about your life.”
I was amazed by her bitterness.
Nancy, in contrast, never expressed bitterness even if she felt it.
She came across as composed, in-charge, optimistic about the things she could do and was doing.
Bette insisted that Nancy was putting on a front and also deceiving herself with a happy façade so people would not pity her. Bette thought it was ok to feel sorry for such people, but she did not fall into that category. Or wouldn’t, unless her insulin was taken away.
She was completely dependent on that little meter attached with a needle to her body, yet did not equate her dependence to Nancy’s.
Maybe because she could still walk and take care of her bodily functions herself. Maybe because she was scared of seeing herself as “that disabled person.” Maybe because she just had diabetes, which was, all said and done, fixable.
It was interesting to see Bette swing from one position to another.
At times she would express her helplessness and sorrow at not being able to control her life. At other times, she would tell me how thankful she was that at least she had a condition she could hide.
Her thoughts on disability and her own detachment from the term intrigued me.
I found myself talking to her freely about pitying those with visible disabilities, something I could not discuss with Nancy for fear of hurting her. I did not have to be conscious about letting my feelings out, nor to avert my gaze each time she looked at me; I could simply tell her that I felt sorry for Nancy. And she would agree.
“It’s ok to feel sorry,” she said. “It’s natural. It’s human.”
The fact that Bette was not visibly disabled and Nancy was, made a huge difference in how we talked.
Once, as we pondered over why “such” things happen, Bette said, “Look, there goes a wheelchair.” I instantly retorted, “There goes a person.”
As my research and interviewing proceeded, my own internal compass was shifting.
As much as I felt sad for “those” disabled people, I also felt the need for them to be acknowledged as “people.”
Nancy helped me see that you are disabled only to the extent you want to be, while Bette kept reminding me of the social stigma attached to disability. Bette was scared – and rightfully so. She was perpetuating the very social attitudes she feared becoming a target of.
—————-
The illusion we call “normalcy”
In the end, I cannot choose between being Nancy or Bette – life in a wheelchair or life as a diabetic.
My original idea that one would be more or less bearable than the other does not hold up.
Bette’s fears of becoming like Nancy one day reaffirms the common norm that the wheelchair signifies dependence, and though ironically enough, Bette in fact is more dependent on her insulin for sustaining her life than Nancy is on her wheelchair, far greater stigma attends to the visible physical disability than to the invisible one.
Bette although is easier to view as “normal” while Nancy is immediately identifiable as “abnormal.” I am actually starting to see Bette more disabled than Nancy.
So I am back to that question: what is normalcy anyway? For someone born with fused fingers, that’s normal – those are the only hands the person has experienced. It’s only upon looking around and seeing that most people have separated fingers would the person grow aware of the difference. Only through social interactions would the person find this difference unfavorable.
It is not disability per se that disturbs me anymore – it is the way disability is defined. Because we “normal” folks are the majority, it is our rules that prevail.
Normalcy and disability are relative terms.
It basically comes down to this – I am normal as long as I do not need any medication or assistive device to carry on with my daily routine, and I am disabled if I need any of those visible external means to help sustain normalcy.
Visible is the key word here.
I realize that when I was talking about throwing away my yet-to-be-born-possibly-disabled child, I was thinking of a child with no limbs, a hole in the heart, a third eye – some weird physical malformation.
I was not thinking of a learning disability or some hidden syndrome. Physical abnormality became disability in my mind; that was why I’d assumed Bette’s struggles would be insignificant compared to Nancy’s.
Yet Nancy is more active in the community than many able-bodied individuals. Nancy did not let the stroke change who she was; Bette is scared she will lose everything if she ends up being like Nancy one day.
I’ve come to understand that – even more than losing friends, or needing support from an able-bodied person, or injecting the right dose of insulin in one’s body – the label of “disability” creates the alienation and the stigma.
One’s spirit, intellect, sense of humor, compassion, abilities – all get lost when compared to others who are “normal.”
Having gotten to know Nancy and Bette, I also now know that life is not about perfection.
It’s about making the best of what is handed to you. It is about meaningful existence, whether with an insulin pump or in a wheelchair.
And with this realization came another bigger one: as we grow older, we will have permanently become a part of the community that we so conveniently shun.
Our day will come…
Copyright secured by Digiprove © 2010 Mansi Bhatia
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May be the label of ‘being disabled’ causes much more trauma than the trauma itself… i have wondered times without number as to why there should be this difference bw individulas (be it financially or health wise)… i still have no answer…
i remember our primary school teacher stressing that one shouldnt use the word handicapped – call them physically challenged… we do tend to couch our emotion (fear/pity/empathy/whatever) behind certain words, hey na… we do tend to have that discomfort…
Bette’s case is a worse case scenario – atleast now i have realised that… she din want to be labeled or so to say… but what i have seen of people – even those who wear glasses – they dont want to wear glasses anymore… apparently, even having high power is not taken well… i was shocked when i realised that… Being normal is hyped a lot i feel… someone who walks with a cane or uses a hearing machine – such simple or should i say lil less disabled/dependent ppl have their own set of social fears.. i have seen them in my daily life… then i can only imagine the ones like Nancy or Bette – they are all real stars… Perfection is indeed about making best use of what life bestows on us…
thanks for the posts Mansi…
I have really enjoyed reading this article. I have a 10 year old daughter with autism and I face ignorance every day but what I like about you is that you are making an effort to understand and not just turning your back on something you choose not to be associated with. A disabled person, as is my daughter, is a human being, a normal soul living a life. I love the way your husband said, “they are fighting back.” It’s all they can do to live a normal life.
CJ xx