Hello lovely people!
Hi, I’m Jessica. For those of you who are new here,
who came across this video because you got a bit nervous and typed into Google
“does getting a mobility aid mean you’ve given up?” OR got sent this video because you maybe told
someone who is interested in getting a mobility aid that they would be ‘giving up’
- oh, friend, that’s not great. I’m sure you were well intentioned but… ouch.
Let’s talk about mobility aids: what they are,
why you might need one and some misconceptions you might have.
- also please, a welcome back and round of applause for the cutaway wall
which is now finished.
Welcome back, side shots.
- I missed you.
Subscribe, even if just for the side shot wall [wink]! And thank you to the members of the
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So, blah blah, what’s wrong with me?
Let’s cut to the chase. Ps. don’t ask people ‘what’s wrong with you?’
P.S Don't ask people 'what's wrong with you?’
I have two genetic disabilities- one that affects my nerves and one
that affects my connective tissue. Hereditary Neuropathy with liability to Pressure Palsies
and Ehlers-Danlos Syndrome with associated postural orthostatic tachycardia syndrome.
Don’t worry you don’t need to remember this, there is no test at the end.
BasicallyI’m like a floppy bag of bones but every time I flop
it hurts. You can see the video linked in the corner but floppy bag of bones
with nerves that paralyse and cause extreme pain is a pretty good summary.
Deafness. It also causes deafness. I’m deaf. That’s a thing.
And I'm blind in one eye but I notice that a lot less. Other
than my nose, I really notice my nose. Such a big nose. You don't realise how
big your nose is until you can’t see out of one eye. Boy is it right there!
There isn’t a lot holding my bones together so going great distances can be a real struggle
that is both painful and exhausting, however, my condition is variable and
what I can manage one day I can’t manage another. This may mean that I just choose
not to go on that outing because it involves walking further than I can manage (and I mean
a leisurely stroll around the garden of some national trust place) or,
in order that I can still participate in the day, I do go but I take a wheelchair with me.
Even when using my wheelchair I generally can still stand up and there are moments where I’m
required to do so such as transferring from chair to wheelchair or into a car or… going
into an inaccessible building because I live in England and we were built by Tudors who thought
old age was 40 and if you couldn’t be cured by bloodletting then, oh well, death for you.
Hence I’m an ‘ambulatory wheelchair user’: a disabled person who needs
to use a wheelchair but can also stand and walk in some circumstances.
- Oh and this is completely skipping the part where my body does this weird nerve thing
where it paralyses from the lower back down for a month every year because I have some kind of
recurring injury site there but my doctor isn’t sure how to prevent
that one yet so it freaks me out and we’re just going to brush over it.
I made a series of videos about finding the perfect mobility aid for me and there was a
lot of info in that- you can watch it by clicking the card in the top
left hand corner of the screen or by going to the link in the description.
But, spoiler alert, an electric wheelchair ended up being the best option for me.
One of the most asked questions through the series though, and one I still get asked now
was ‘does getting a mobility aid mean you’re ‘giving up’?’
- oh honey.
Let’s break that down.
Firstly: what is a mobility aid?
A mobility aid is a device designed to assist walking or otherwise improve the mobility of
people with a mobility impairment. Included in this are wheelchairs, mobility scooters,
zimmer frames, crutches, canes, gait trainers, scooters, or even stair lifts. It’s all about
creating a freedom of movement similar to that of unassisted walking or standing up from a chair.
You might not have considered this option BUT a white cane and a guide dog can also be thought of
as mobility aids since they help a person have a level of mobility they would not otherwise enjoy.
And what does ‘giving up’ mean?
- well it isn’t nice!
It’s definitely not a kind thing to tell someone.
- I’m personally of the opinion that ‘tough love’ doesn’t work,
especially when someone is dealing with ill health or a wonky body. Fighting hard in that
situation is just going to make things worse. What you need is some compassion and kindness.
But… being compassionate and kind to yourself is actually one of the bravest things you can do.
It’s really, really hard! Far harder than ‘struggling on’,
even though that isn’t the right thing for your body to be doing.
Hold on a moment, let’s bring it back; what do people MEAN when they say ‘giving up’?
The assumption here is that either
1. Disability is static. You are disabled or you are not. The world is black and white.
if you sit in a wheelchair for even a second you’ll never stand again.
2. Disability will only go backwards. You should hold off as long as possible
before you sit down in that wheelchair, regardless of the pain you’re in now,
because the only step after that is a bed and then doom.
Yet we all have entirely different journeys when it comes to the twisting
roads our bodies will take us on through our lives and it’s incredibly personal to you.
Your body, whatever level of ‘health’ it may be in, exists independently of the things that
help you get through the day. Whether those things are a fuzzy jumper because it’s cold,
a sandwich because you’re hungry or a set of wheels to get you a
distance further than you can comfortably walk.
No one is judging you for hopping in your car
when you need to get all the way to the other side of town-
- I say that but with the rising cost of fuel lately I feel like my own car is judging me!
Because you couldn’t feasibly walk that far and back in the time you have.
You are just a mushy, fragile, little human body and it’s understandable.
And sometimes the body you’ve been given is a bit more floppy or pained or fragile
or gosh darn just missing some pieces, compared to the other bodies around you.
And sure, maybe neither of you can walk to the other side of town
but they CAN walk to the end of the street and you… can’t.
You have to break out the wheels to do so. Quick point of order though: someone who can
walk to the end of the street doesn’t get to turn around and tell you that they can
do it so you must be able to do it too. Just like a marathon runner doesn’t get to jog to
the other side of town and then tell the two of you that ‘it’s easy, you can do it too!’
Only you know whether or not you need it.
And that annoying person making all of the assumptions is missing the main point:
that the moment in your life at which you get a wheelchair is
generally when you start to see an upturn in independence, because there was a downturn.
A mobility aid helps you to regain the things you’d started to lose
and worried you’d never get back.
One of the best pieces of advice about mobility aids is:
“If it’s annoying to use it: you don’t need it. If it’s annoying not to use it: you need it.”
And I’m not talking about ‘is it annoying because
other people act irritated that they have to lift your mobility aid into the car’ or
‘is it annoying because you feel embarrassed when people look at you as you enter a room’-
both of which are fully justified feelings to have but not to the
extent that you cause yourself physical damage because you’re
pushing yourself past the point where you should have had a bloody sit down.
- Also: if you’re asking me whether you need a mobility aid or not…
you probably already know the answer to the question.
I personally don’t use my wheelchair daily because… I don’t leave my house daily.
I’ve formed my day to day life so it involves a lot of small movements from
sitting to sitting to sitting to… lying down playing with my baby.
I just don’t stand up much at home. It makes my feet purple and I get quite faint.
And it HURTS.
For example, when I’m hanging up the washing,
I sit on the floor next to the open machine and hang clothes on the drying rack from the
lower levels up, reaching as high as I can go until I have to stand up at the very end.
In the bathroom every evening doing my face routine and brushing my teeth,
I always sit on the toilet with a little freestanding mirror rather than standing up
over the sink to look in the big mirror.
- Which is such a shame because the big mirror has lights around it that honestly make you look
gorgeous even when you’re feeling your worst and it’s such a confidence boost!
We’ve set up our house to be child-friendly to our baby so he can be independent but also
so I can interact with him easily. I don’t bend over, I just lie down on the floor next to him.
But I definitely always use my wheelchair on long ‘walks’
like in an airport because getting to the gate can be very long and arduous plus sitting on a
plane for a long time means my joints are very stiff and I’ll have trouble walking.
Or if I was going up to London for the day to have a meeting or generally travelling by train.
Which is EXHAUSTINGLY much further than google maps tells you it will be because you have to
go back and forth on yourself in a station and then round and round and round… because we’re a
tiny old island and we’re working with what we’ve got. And building on top of victorian things.
I also don’t use my wheelchair in exactly the same way all year round because my
condition is very changeable. At some points, conserving energy is the most important thing
because my body is weaker for a few months and thus I will use my wheelchair more- but
it doesn’t mean I’m injured so please don’t panic if you see me using my wheelchair in
a video or on instagram, I just need to sit down… but I also have somewhere to be.
Conversely, at other times, it’s more important that I’m able to really be moving my body around
and ‘getting my steps in’ so I try to make sure that I’m walking as much as I am able. Up to my
limit though! I don’t push myself. I have to find where I’m comfortable at on that day and then
edge towards it. Which, since it changes every day, is a little difficult. But that’s the idea.
- That’s a thing called ‘pacing’, learning where your energy limits are, and I have a video about
it here which you can watch by clicking the card up here or the link in the description below.
The secret is though… without my wheelchair,
I cut things short. Without my wheelchair I do give up on outings long before I want to.
Without my wheelchair I visit two shops rather than five, I see only two areas of the museum, not
six, without my wheelchair I know that the next day I’ll be exhausted rather than feeling fine.
So, if you feel like you’re already cutting down on things in your life because
they don’t fit within the limits of your pain or energy then how could
using a mobility aid, which would allow you to use the same amount of energy
you’re comfortable doing but accomplish far more, ever possibly be ‘giving up’?
-It can’t. It isn’t.
A mobility aid is not an innately bad,
negative thing. Just like disability is not an innately bad negative thing it just… IS.
Controversial supposedly but there we go.
If it’s the right time for you to use a mobility aid- and if you’re watching
this video and doing lots of research and thinking about all of your options-
then what you’re about to access is freedom, not constriction.
-And that seems pretty great to me.
Thanks for watching and thank you again to the members of the Kellgren-Fozard Club who help to
keep this channel going. If you’d like to become a member, click the ‘join’ button below to sign
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Byee