If you posted the question on an Internet boating forum, “I want to go boating – what boat should
I buy?” no one would give you a literal answer. The jaded members would write you off as crazy (after
all, who in his or her right mind would ask such an absurdly simple question toward such a complex purchase?),
and the helpful members would ask a million questions – what bodies of water do you want to use it on,
what recreations do you wish to partake, who will be with you, how do you wish to store it, how much
money do you have to spend, and on and on. However, no one would answer the single question of, I want
to go boating – what boat should I buy? with a concrete answer of, “Look at the Grady-White Marlin 300
– we love ours,” namely because the Marlin 300 is a 30-foot offshore fishing boat, and what if the original
poster of the question lived in a condominium in Nashville, and hated fishing? Of course, boaters know
that there are far too many variables to ethically recommend a specific model to a fellow want-to-be
boater without asking a litany of educated questions.|
Yet, in the disability community, we see
wheelchair users ask the same type of generic question on Internet forums – I need a new wheelchair,
what should I get? – and others literally reply with exact models, as if there's a concrete answer:
“You should look at the XYZ. I love mine.”
But, here's the problem: If recommending a specific
boat to a complete stranger whom you know absolutely nothing about is ludicrous and unethical, recommending
a specific wheelchair to a complete stranger is downright reckless and immoral. If a boat doesn't fit
one's needs when bought, the consequence is mostly financial; but, if a wheelchair doesn't fit one's
needs when bought, the consequences can be debilitating at best, and life threatening at worst. Therefore,
it's striking how in a recreation like boating, peers seem to be more conscientious of their advice than
those in the wheelchair world, where people don't seem to mind giving uninformed advice to strangers,
with no consideration toward the uniqueness of individual lives and the strikingly diverse needs of those
with disabilities. The person asking which wheelchair to buy could be a 30-year-old quadriplegic living
on a ranch, or a 60-year-old with COPD living in a public housing complex; yet, some will tell both to
buy the exact same wheelchair irregardless that the two users' needs are worlds apart.
we know that two strangers can have polar-opposite lives – from where they live to body type to age to
cultural traditions to countless other differences. And, when we add disability to the mix, the differences
are even more profound. It's for these reasons why formal ”wheelchair evaluations” are required by insurers
for rehab mobility products, where a clinician must analyze the entirety of an individual's life before
recommending a specific wheelchair configuration. Clinicians know that one size doesn't fit all, that
a literal life analysis must be performed before recommending a particular rehab wheelchair to anyone.
It's these facts that some with disabilities overlook online, where they mistakenly project their
singular mobility needs upon everyone else, where they assume, It works for me, so it will work for
everyone else....Yet, that's never the case when it comes to rehab wheelchairs – they're not one product
suits all. Unfortunately, uninformed consumers can believe misguided advice, and follow it. But, again,
based on a vast diversity of needs, such assumptions are hazardous.
A dramatic case I recall was
a daughter in her 50s who purchased a rehab power wheelchair for her elderly mother. The daughter had
logged on to a disability-related web site, noting that her mother needed a power wheelchair. Wheelchair
users on the site recommended a specific model, and with the best of intentions, the daughter paid $13,000
out of her own pocket to buy the power wheelchair from a provider. One would hope that the story would
end there, with the most well-meaning of daughter getting her mother the mobility she needs. But, it's
at this point where the unfortunate story really began.
See, when the daughter contacted me, the
$13,000 power wheelchair was sitting in her garage, her mother's mobility dashed. The power wheelchair
recommended so highly – and purchased, as a result – was an oversize “all-terrain” model, completely
incompatible with the 90-pound, 76-year-old grandmother living in an 850-square-foot senior apartment
in Brooklyn, New York. The grandmother had no way of using the power wheelchair.
There the daughter
was, $13,000 gone, her mother without mobility, with a provider who wouldn't take the power wheelchair
back – he ordered what was asked.
The daughter ultimately recognized her mistakes, realizing that
rather than solely relying on online recommendations by well-meaning but truly oblivious strangers, she
should have had her mother evaluated in-person by a mobility professional, who would have rightly recommended
a compact power wheelchair. However, what the online users who encouraged purchasing that specific all-terrain
model without asking any questions likely never realized was that they were to some degree responsible
for this family's heartache and financial loss. If one person online had responsibly said, I have that
power wheelchair and it's great, but everyone's needs are different, and your mother needs a proper evaluation
by a professional, it would have spared that family a lot of grief.
Often, we only know of our
own disability experience and mobility needs – and it's easy to unwittingly project our needs and likes
onto others. However, as constructive members of online disability communities – and the disability community
as a whole – we have an obligation to handle giving advice responsibly and ethically, knowing proper
boundaries, where the other person's needs and wishes should be considered separate from our own. Again,
disabilities, lifestyles, and mobility needs are exceptionally diverse, and one should never assume that
what works well for one will work well for another.
If someone asks a generic question of, “I
need a wheelchair, what should I get?” we shouldn't give a concrete answer based on the specific wheelchair
models each of us use; rather, we should either advise the person to seek a professional evaluation,
or ask a litany of educated, probing questions that may clarify the person's needs. Such an approach
puts the user's interests above our own bias or experience – and that's the true spirit of helping others
with mobility, where their needs come first.
Published 4/2011, Copyright 2011, WheelchairJunkie.com