Thursday, June 07, 2012

Throne of Shame

I haven't decided.

Am I sitting in shame?

Or am I sitting in misery?

Or am I sitting in sheer hopelessness?

Help me decide.

Here is the conversation I had with a woman in my apartment building. She struck up the conversation with me while I was sitting outside waiting for my ride to work. Apparently she visits the building regularly because her elderly mother lives there. She told me that over the last year her mother has become less mobile and simply has not been able to get out as she can't walk down the elevator and through the lobby to the car. I asked if she'd considered a wheelchair. I explained how the wheelchair opened up my life and made work and recreation possible for me.

She said, 'Oh, no, she's much too proud to use a wheelchair."

I've heard this before. A friend who couldn't use a hearing aide because 'he was too proud.' Another fellow telling me that he had purchased a walker but couldn't use it because 'he was too proud.' to do so.


Too proud.

Now, I do understand that people need to learn to adapt to new situations in their life. I understand that these things can be symbols of aging. And I really understand that these things involve a 'coming out' ... even a small coming out ... as a having a disability. But really - they are too proud to be disabled? Too proud to need assistance?

Then this woman, said to me sitting in my throne of shame on wheels, 'And I kind of admire her for it.'

I said 'You admire your mother for being home bound when it's not necessary?'

She stumbled with the question a bit.

I suggested to her that maybe the fact that people admire her for clinging to non-disabled status is what keeps her clinging to non-disabled status. Maybe the idea that using a wheelchair involves a loss of pride rather than a gain of mobility is what keeps people shut in. I knew she was uncomfortable with what I was saying.

Then she said, 'Well, you must just see things differently.'

I said, 'Being out doors will do that to a person.'

It was a conversation that went no where and achieved nothing but ... it made me think about the fear that people have of disability and about being a member of the disability community. It also made me think about 'pride' in a different way. We need disability pride because people seem to assume we live with disability shame.

I don't live in shame.

I don't move in shame.

I don't spend any time at all in the land of shame.

Maybe that comes as a surprise to others who don't really understand that when someone says 'too proud' they really mean, 'not proud enough.'

Because people with pride stuff their ears with bright blue hearing aids, sit down in florescent green wheelchairs and have their hair dyed purple to match their walkers.

People with pride live out.

They used to say 'a closet is no place to live.'

Well, pride threw open the closet door ... and used properly it can ride a scooter down the hallway and into the street. And that my friends, is the daily disability pride march that each of us makes daily ... out of captivity and into the streets!


Anonymous said...

When I got my wheelchair, my daughter was just a little older than Ruby, Eight years old and her favorite thing was shopping. Almost the first thing I did with the wheelchair was be with her while she got to shop *as long as she wanted*.

We didn't buy anything, just looked, but we didn't need to leave because Mom couldn't stand up any more.

My arthritis makes me disabled.
The wheelchair frees me.


Cyndi in BC said...

My wheelchair gives me freedom and independence! In fact, I recently had to give the freedom speech to my mother who is just now getting to the point where a walker or cane would give her some freedom too. :)

CL said...

Wow. It's bad enough that people consider themselves too "proud" to use a wheelchair, but it's really unfortunate when their loved ones are proud of them for resisting. I hope your conversation sticks in her mind, and that she remembers it next time the subject come up -- maybe she will slowly and unconsciously reconsider. I'm really glad you were so direct with her.

Rachael said...

Yep, this... After some years of having my daughter live with a wheelchair, my mother 'didn't want one in the house' for my dad because it all 'wasn't that bad'. Except that meant Dad not getting outside very often, and it being pretty damned dangerous for those of us who risked our backs and his safety taking him out when he could barely control a walker....
Insulting to me (and my daughter), on so many levels, even though I knew she didn't mean it like that...

Happy said...

My family helped me decorate my walker by painting designs all over it with nail polish. I'm very proud of it. :)

Anonymous said...

I can understand folks putting off the aides as long as possible. In some cases it should be encouraged for the less you use your "bits and pieces" the less they will work. But yes - there becomes a time when the choice comes down to pride - loosing the bad "I'm too good for this" pride and embracing the "see what I can do now" pride.

The daughter probably embraces the false pride because deep down she has fears about her mother - and the slippery slope that aging can bring - and the additional maintenance and care that may be required should her mother need it. Better to have mom inside, realatively safe then worry about her being out and about...but just who is that decision for? It eases the daughter and imprisions the mother.

So glad you had the conversation - may just be the spark needed.

Anonymous said...

Last summer the weather was so hot that the air in the area I live become very polluted and almost impossible for me to breath. That was the time I got an oxygenator (a machine extracting oxygen from room air) and had to use the nasal cannula very often. It gave me relief and I felt much better using it.
But it took a long time to accept another thing I had to have to deal with my chd (congenital heart defect) because to me it felt like admitting that I got sicker. And I dont know what will happen if I get so oxygen dependend that Iwould have to carry some with me if I go outside.
Is it pride or fear that keeps people from using things they should use to be more comfortable?

Anonymous said...

Wow, I think Anonymous @ 5:07 AM absolutely nailed it PERFECTLY in his/her 2nd paragraph!


Belinda said...

Well said. I bet the conversation did go somewhere and left the woman processing what you said.

I understand the fight to remain independent as long as possible, but it is sad to allow your world to shrink indefinitely or force others to adapt to a limitation that doesn't need to be there (thinking of my dad who refused hearing aids for far too long and thus was isolated.)

Anonymous said...

I think you had just the right conversation with her and I also think anonymous at 5:07 nailed it.

We knew my son would be a wheelchair user since he was 18 months old. He got his power chair when he was three and I was thrilled because of the freedom it gave him. I have since learned that I am unusual in this attitude recently I asked his therapist if she knew someone who could use his old manual chair. She said she did, but they won't admit it yet. People don't want to face the reality that they need it.

Last year my son came home with a project they did in school titled my best day ever. His was the day he got his powerchair.

The Shorter Bloggess said...

I wonder about the ladies real reason for refusing to use a wheelchair. We only know what the daughter says is her reason, not what she really thinks.

I wonder if her reason for not wanting to use a wheel chair is fear not pride. For an older person, admitting that they need assistance in any form, whether it's using a wheelchair or with help around the house can be the start of a slippery slope for many people where their autonomy is quickly taken away. Perhaps the lady fears that is she admits she needs a wheelchair she'll be shipped off to a home.

Laura said...

It took me a while when I got the wheel chair to adjust. But it was my hang up from being told in early elementary that if I ever started using a chair I'd forget how to walk. Nice thing to tell a kid and btw it didn't happen. What has happened is I can now keep up and do more things with friends because I don't t get tired as fast. Also when I do walk which I do anytime I'm in a safe place to do it. Nobody can go as slow as I need to go to keep standing upright. I find that the wheelchair and scooter actually negate the biggest part of my disability for me. Hello mostly equal ground!!! How cool is that??? I also discovered with my chair and service dog I am much more approachable to people. I know my strange gait startles the unprepared because when I am sitting no one realizes I have a disability until I move. In the last year I got a scooter for mobility around town. Like a car I guess. People are shocked when the see me walking :( Seriously though for me I wouldn't change one thing about my having CP except maybe the driving a car thing. Strangely My mom who has me and a sister who uses a wheelchair full time and is loosing her hearing on a scale that makes it difficult to converse with her at all. She refuses to even have her hearing tested. Because she doesn't want to be appear old/disabled. It hurts ti see her struggle and to know that she sees disability as a negative. Even though when I ask about it she says I just don't see you or Amy (her sister) that way. I wonder if its a harder adjustment for those who come to it suddenly or later in life???

Tamara said...

I don't think you're sitting in shame, misery, or sheer hopelessness. I think she is. When you're willing to give up leaving your home because you would need help to do so, that's a warped feeling of pride. Very sad.

Anonymous said...

My 86 year-old father has arthritis which makes it very difficult to get around. I've tried to gently urge him to consider getting a cane or walker but he refuses to consider it. Now instead of going to 2 poker games a week and to the weekly church service, he only leaves the apartment once a day to shuffle off to the dining room to eat dinner. My mother is still very healthy and can still get around very easily. Any suggestions??

Debbie (NJ)

Utter Randomness said...

I have always viewed mobility aids as something liberating. I can understand people not wanting to give in to age, but eventually something has to give.

I refused to get a cane for a long time, not because I was too proud to use one, but because I didn't need it and I was too stubborn to buy something just to prove to people that I'm disabled and that I'm not just lazy. The day that made the difference for me, I was getting on the bus, and I had to put the priority seating seat down, while people stared at me and refused to help in a stunning display of the vigilantism engendered by this discourse about "fakers". In order to put the seat down, I have to put myself slightly off balance, and the driver started driving, which caused me to fall pretty spectacularly and smash up my "good" knee pretty badly. I knew then that what needed to give was my stubborn insistence on not buying something I didn't need. It turns out that I did need it, and it helps immensely with the pain. People still look at me like I'm a faker, and like they can't figure out why someone my age would need a cane, but it makes things slightly easier.

Anonymous said...

Forgive me....I pictured you rubbing her head.....smiling and just rolling away with a look of reluctant pity for her. Many of the people I support are elderly. Choosing to not engage is very common. I have tried many approaches, some success, more "failures" if you can call letting people chose how they wish to finish their lives a failure. No easy answers. As support staff we usually get stuck between what we "feel" is best for the person VS. what they are saying they want. Even when we "KNOW" getting out and being social is probally much better for the person. The sad part of the story for me, no one really knows what the mom really wants, just what the daughter has chosen.
Have a great day

bob said...

Adding to the Shorter Blogess comment...My guess is that the identity issue is not disability, but old age. Many older people do not think of themselves as disabled, but as old. As SB notes, the fear is loss of independence, nursing home and of course death.

In talking about these issue with my own parents, I tried to stress that the various adaptive measures my brother and I were suggesting would enble them to stay in their home longer and more safely. (We had only limited success.) For many older people the issue is not getting out, but stying in their homes.

Only when my father recently needed to go into a nursing home did my mother say "We should have listened to you more."

Anonymous said...

This is my struggle now! I have just come to admitting that I like using my walker because I can walk farther with less fear of falling, but I hate having to ask friends to manage it for me, not helped by my husband's resistance to hauling it everywhere. I have bouts of frustration , anger, fear because I'm totally dependent on others to take me where I want/ need to go. I'm an extremely social person & the thought of being housebound is very scary to me! But I am miraculously blessed with friends and family who help. I sometimes feel that the gift of my disability is finding how much people really care!

Molly said...

There's a new series out in the US called Push Girls, about four different women in wheelchairs... It made me think of this, because they are four strong, sexual, beautiful, women who are all in wheelchairs. I'd be interested hear your take on it!