Saturday, February 23, 2013

You First

It was a tense few minutes. My power chair, Henry, was returned after a time away at a spa. A really expensive spa at that. He sat there in the hallway looking like he was glad to be home. I nervously climbed aboard and out we went. After 4 years of use, doing a lot of miles, I suppose its only to be expected that repairs will need done. However as year after year passed, I came to think of him as indestructible. This breakdown shook my confidence. I was told that the chair would be faster and more responsive to the touch, and both those are true. But I didn't want faster and I didn't want more responsive, no matter how nice those things are, I want reliable.

We ventured out on a test run. Up to the bank. Over for lunch. Mail a package at the post office. All normal every day things that I want to be able to do again without thought or concern. It all went well. As we were coming home I began to relax and enjoy the power behind the power chair. The scooter served me well, and thank heavens for it, but it's not as powerful and it's very different to operate. It's narrower so it can go places the chair can't. It's longer so it can't go places the chair can. They are different beasts.

One of the things that's odd is the social difference I've noticed between using a chair and using a scooter. Before I write about the difference I noticed in people's reaction ... I want to see if any of you have noticed any kind of difference in social approval or disapproval based on the mobility aid you use. I've talked to people who tell me that there is a huge difference between cane and walker -  interesting stuff this - seeing how prejudice and stereotype are fine tuned.

For those readers who use neither, please contribute. If you were going to guess a difference in reaction between the two means to transport, what would you think the difference was?

Anyways, you first ... then me.


CL said...

My guess is that people are more negative and prejudiced about scooter users. This impression doesn't come from personal experience, but from my memories of some awful things that I have seen on the internet. I feel like people associate wheelchairs with "real" disability, and they associate scooters with choosing not to walk. I don't want to say more because I don't want to perpetuate negative stereotypes by repeating them, but I've seen some awful things about scooters.

Anonymous said...

Personally I get treated more "normal" in a scooter verses a wheelchair. There seems to be some perception that a wheelchair houses a person with a "real" disability - verses a scooter being a vehicle of convenience. Both have their pros and cons, much like Henry and Scoot. Perhaps a little more consideration towards me in a wheelchair although I find folks don't address me directly. A little more inclusion with a scooter. Ohh- having used a walker and then cane - much the same. Walker seems to evoke more consideration, but less involvement - the cane is almost ignored. I'll be interested in other folks experiences.

Mary said...

I got a lot of disapproval for being a younger adult using a mobility scooter. Being in my 20s and sitting on a "granny kart" was unacceptable to many people and I got many remarks along the lines of "you don't need one of those at your age!" as well as variations on the "lazy" theme. I wonder if perhaps your being that bit older than me would have led to you having a different experience?

I can walk a little (like car to front door distances), so the advantage of the scooter was that people didn't get upset when I grasped the already-entirely-visible walking stick off the front in order to stand up and/or take a few steps. It seemed to be sort of expected that a scooter user still had some use of their legs. These days I use a power-assisted wheelchair and have a folding stick in my bag on the back. It's most noticeable in shoe shops. I park my chair somewhere out of the way to try shoes on, but I need to know what they look like and that I can safely wear them for the little bits of walking that I do, so I pull out the walking stick, get out of the chair, and toddle a metre or two to the nearest mirror, and people are horrified.

Tamara said...

I was wondering how Henry was doing! So happy to hear he's back in action. The Scooter Store, which may just be in the US, is under investigation for fraud. They advertise that they can help get payment approved for them. I always think of them when I see a scooter. They also advertise they are for mobility issues, which sounds different from disability ...

Jan Goldfield said...

As a scooter user, I disappear from sight. People, particularly men, tend to block aisles or sidewalks. But when using a wheelchair in an airport, the screeners ask my partner, "Can she talk?" She replies, "That may have not been the smartest thing to say." I may well chime in with stentorian tones.
So as a scooter user, I find myself less marginalized than a wheelchair user might. But here in the southern US, accessibility and acceptance for any disability is decades away.

krlr said...

I don't use any but I'm watching my grandmother work her way thru the list. And, at your request, though I fear this might be something of a Rorschach test: Canes can be dapper hollywood musical accessories, Walkers for feisty elderly ladies, wheelchairs for significant permanent mobility issues... but I'm guessing the scooter garners the poorest reactions, along the lines of if you walked more you wouldn't need that. Maybe? Am looking forward to reading your experience!

Maggie said...

Most of the scooters I see are the ones provided by management in big-box stores and supermarkets. The assumption most walking shoppers seem to make is that the person riding the scooter is fully ambulatory but finds the long aisles too fatiguing. My non-scientific observation leads me to suppose that most shoppers assume that older and frailer people are using the scooters appropriately but younger and more robust-looking people are not.

Power wheelchairs, on the other hand, appear to be exclusively used by owners. Most of the people I see in power wheelchairs are riding from one building out along the sidewalk (or street!) and into another building. My equally non-scientific observation is that most walking onlookers assume permanent and severe disability for a person using a power chair. I've also seen shock when a wheelchair user stands up and walks a few steps - but also have seen equal shock when someone like a TSA employee asks if the person in the chair can walk a few steps, and then acts irritated (or disbelieving) when told the person can't do that.

Michelle Jadaa said...

I use a cane and a mobility scooter.I had one bad response from a senior about me needing to work out when i was in the scooter, but apart from that its been fine.From observation id say people in wheelchairs are seen as having a mental disability as well as physical.Ill be interested in your observations:)

Rachel said...

I'd say there are similar biases in the pediatric population between the choice to use a large "special needs stroller" vs. opting to go for a traditional wheelchair.

My son's needs mandated that he needed the supports of a full custom rehab wheelchair, so he got one shortly before age 3. The reaction from other parents of children the same age and with similar needs tended to be that we were "giving up" hope that he would ever walk and stigmatizing him when he could still "pass" for normal(ish) if he were in a big old jogging stroller type of thing. In my mind, we were embracing who my son was and optimizing his abilities by giving him the most appropriate and supportive piece of equipment to allow him to be as engaged in his world as possible. And I personally viewed the adaptive stroller crowd as being ashamed of their child's disability or in denial.

Then there are the parents who manage early power chair acquisitions and those whose kids self-propel -- both of whom have doubtless invested a huge amount of time and resources, and who somehow seemed very smug and condescending to other moms (or maybe I was just jealous because my son did not qualify for power or self propulsion, and I didn't have the resources to fight for that).

I do find it interesting how the choice of equipment becomes a sort of short hand for establishing a hierarchy or class structure in disability circles. I try to avoid doing it myself, but I have to admit that I do make assumptions about other families based on their durable medical equipment. Very odd, because I'm not at all prone to judge anyone based on their clothing style, hair, body art, dental work, choice of car, etc.

Anonymous said...

What I have noticed where I am (UK) is that scooter users seemed to be viewed as plucky and wheelchair users are viewed with pity.

liebjabberings said...

A great topic - especially for those of us with 'hidden' disabilities. I have CFS. I fatigue extremely easily, and using a power cart at the store means I can shop - and have the energy later to drive home safely.

But I CAN walk (leaving aside the problems left over from spinal surgery); for a few steps (depending on day), I can look 'fully normal;' for a couple of minutes - sometimes longer - before the walking muscles shut down (I think they run out of sugar or something).

It is ALWAYS a consideration: what do I use? Nothing - if I can pop in and out of somewhere (rare).

The walker? If I have to go any distance, and might need to sit down (like to make a decision or read labels). If I don't have my own seat, I have been forced by my body to sit on the floor. That freaks people out, by the way.

Tried a cane - but there is no support when I HAVE to sit down - and it is unsymmetrical support - but at least people give you time enough to cross the street.

In airports, I HAVE to have a wheelchair or electric cart. When I bring the walker along, I have to deal with lifting it myself onto the electric cart (the drivers don't seem to help), or drag it alongside as I'm being pushed (thank goodness it folds).

But I never get to NOT think about the issue, and how people see me, and whether they will assume I'm parking in the Handicapped spot illegally (because my first steps will look normal as I walk away from the car).

It is wearisome.

I'm 63, so the problem will gradually go away - older people are simply assumed to be feeble by most younger people.

The worst part is asking myself every time I go out (I minimize that because it really sucks energy away from writing, my avocation) whether it is worth it.

In summary, I am immensely grateful for those who fought for Handicapped parking spots.

I also wish - as you probably do - that those who 'comply' with the regulations were forced to somehow have to experience how many of those accommodations are really substandard - elevators that don't work, ramps that are too steep, Handicapped parking spots placed very far from the entrance they are supposed to serve, bathrooms that aren't maintained, lack of railings, stalls that are too small...

I am trying to put some of this into the novel I'm writing (serialized on my blog for anyone with the slightest interest). The main character has CFS but I'm trying my darndest to make it a side issue - and not the main one.

Dying to hear your take on the wheelchair vs. scooter issue.

Glad I discovered your blog. Have absolutely no idea how.


Anonymous said...

Well, I would posit that "younger" (no white/gray hair) scooter users are generally looked at as "lazy" and unwilling to make necessary changes their lives in order to be ambulatory again.

I would further suppose that older (plenty of gray/white hair plus wrinkles) scooter users are looked at as feisty and plucky. Not content to be relegated to wheelchairs, they opt for a hipper and cooler mode of transport, and are probably applauded for their determination and grit.

Wheelchair users of any age? So, so sad. They are to be pitied, because they are relegated to an antiquated mode of transport that only further points out just how much "less" of a life they must settle for.

Those are my guesses, Sue

Anonymous said...

Hi there David- it was great seeing and listening to you today!!
ps- love that watch!!!

Moomin Girl said...

People are more likely to be condescending, patronising, and assume I have an intellectual disability (I don't) when I use a wheelchair.

People treat me with more respect in a scooter, as tho I am a 'normal' person, not a disabled person.

People are shocked when I stand up out of the wheelchair, but not when I stand up out of the scooter (I can walk short distances, but it is very fatiguing.)

Taxi drivers ask why I use a wheelchair instead of a scooter when I can walk 12 metres - wheelchairs get into much smaller spaces eg shops/theatres tho.

jesse-the-k said...

I've used all four. Like liebjabberings I have CFS, and my capacity varies from day to day.

I've experienced human kindness and bigotry using all of them. As a powerchair user, assume that others assume I can't walk, although I can. It's kinda fun when I stand up, I say "it's my Lourdes moment."

As a rolling walker user, I most invisible. I'll use it in a shop with many things at high eye levels, People will try to walk right through me.

Beth said...

Ok, so I didn't make it before you, but I haven't read the more recent post yet, either.

I sometimes use a rollator (a 4-wheeled walker with a seat) and sometimes use a manual wheelchair. Wheelchair is standard black and sans arm rests (ever since my arm got caught in a doorway). Walker has a navy-blue frame, shiny blue flames on the front, and a bold beaded flower patch where the logo goes. Also, I'm around 30, seen as terribly young for any device.

I think I get both more and less respect when I use my walker. I mean, most interaction is more "normal" then. Fewer are the times I'm treated subtly differently. And yet... when I am treated differently, it tends to be in a bigger way. I don't get incredulous "Do you really need that?" sneers about my wheelchair and people seem more likely to make that and other rude inquiries when I'm using my walker. Also get polite inquiries from other PWDs about my walker, cuz it's just so cool. ;)

In my wheelchair, I get fewer inquiries, more offers (and occasional insistence) of help, and more of those awkward side-long "no, I'm not looking at you, really.." glances. And for some reason, people tend to think I'm younger when I'm in my wheelchair. And by younger, I mean like half my age. I figure it's a way to justify thinking of me as having less social standing than I would were I not disabled. Pretty bizarre, how much my perceived age varies based on what device I use.


Tamara, the advertizing for "mobility issues" vs "disability"... yeah, that's uncomfortable. There seems to be a fair amount of people who make a difference between function lost to age and "disability". If you're, say, 70 and losing the ability to walk distances, it's just age. You're not disabled (the horror!), you're just "getting older" and "having trouble getting around". A lot of people take the same trouble as totally different things depending on what age gained (and I've no idea the boundary) and whether quickly or slowly. Try talking to someone with age-related hearing loss about disability. Ten-to-one they'd insist them needing a hearing aid isn't disability because it's just getting older. Never mind bringing up the assistive devices called "eye glasses" or "contact lenses". Disability is really, really bad, see? And they don't have it! It's an absurd idea that's the product of the stigma of disability.

AKMom said...

I haven't read your follow up yet...

I had to really stop and think if I feel different towards chair or scooter users. I feel I can honestly say I do not. No feelings at all. They are people. they might need help at the store, but then so do I when the item I want is on a shelf at head level, pushed way back. Their "head level" is just lower than mine. :)

Perhaps my view is skewed by having an adult daughter who sometimes needs a wheel chair and other times is about as "normal" as "normal" is. (What IS normal??)

I would love to hear you speak some day. Ever think about coming to Alaska?

BubbleGirl said...

I had to use a cane almost every day for a year, when I was 23 years old. It was around the time when I dislocated my hip 5 times a day for a year. If I didn't use my cane, I wouldn't be able to go far without a major injury, but I could walk at near-normal speeds with my cane, and at that age, I looked like I was using it as an "accessory" and not an "assistive device."

I got weird looks from people, but not too many comments. I also had the experience of feeling like the Outbreak Monkey. It seemed as though everyone was afraid to be near me.

I got more pity, and even stranger looks though, when I had a neurological movement disorder (which in no way impaired my mental capacity) than I got from using a cane. People assumed that when I was shaking uncontrollably, I must also be entirely mentally incompetent. I was treated like a 2 year old, and people seemed to think I needed a "keeper" to be with me.