In conversation with Martyn Sibley

Picture of Molly Watt

Usability & Accessibility Consultant

1 minute read

Empowering Others

We recently interviewed Martyn Sibley as part of our #InclusiveHealth insights series. Martin is a businessman, active blogger and wheelchair user, who was born with a condition called Spinal Muscular Atrophy(SMA).

He chatted with Molly Watt and shared his experience of what it was like growing up and how things changed for him as an adult.

It's fair to say that Martyn and Molly shared some similar experiences in their transition from child to adult health services.

He also explored the social model of disability, looking at how we might remove barriers by changing attitudes and through education. The full interview is available in audio format below, and on the WeAreSigmaTV YouTube channel.

When I hit 18, the services fell off a cliff and suddenly there were no adult consultants locally that were aware of SMA

okay cool hi Martin and good to see you
I'm Molly and I work at Sigma as my
accessibility usability consultant so I
work within part-time and I think one of
the things that we're really passionate
about is looking at end-user experiences
and good and bad and taking root various
services that were mine and I obviously
can empathize to a certain extent being
disabled myself the emergence of
deafblind we can all be excluded and
it's quite a challenge to overcome
so I suppose today is really - just a
chat about that really whether you could
tell us about and you know some
experiences that you've had that first
of all introduce yourself and we'll go
from there okay that sounds like a plan
cool well yeah it's good to meet you
morning obviously we've all part of some
of course digitally a few so I guess
it's still digital in the moment but
it's a nice that virtual public
conversation with you after all this
time yeah in terms of myself and I'm
Martin I'm disability wise I'm a
wheelchair user I have a disability
called spinal muscular atrophy which has
meant since birth my muscles have not
really ever been strong enough to to
walk or to even upper body is weaker as
well so I always have my electric
wheelchair and I have a team of carers
that support me with my day-to-day
living and in terms of life I don't ever
let that get in the way and I've - there
travel lots and I got a master's degree
at uni and yet one a few businesses and
generally just have a zest for life and
more recently just trying to help
empower other disabled people to do the
same that's amazing and so that's one of
the things that I'd say that we have in
common and I looked to your website and
you blog a lot which is amazing so I
think that's really key to kind of get
the awareness out there about the
capabilities like that what we are
capable of doing a post of what we can't
do so I'm very optimistic like that and
I I thought I read that a lot on your
website and your blog and everything
which is really really
just music to my ears to my death is so
I say something so that's really really
cool and so would you say that being a
wheelchair user that you've struggled
with our health services at all how has
that been as I've gotten better as you
grown up a bit or how would you so I
suppose my experience as a child was
that I was going quite regularly for
having calipers and so that the plaster
of Paris was put on both legs and then
they created the things called calipers
which meant I could stand up with with
the support and then there would
sometimes be physio obviously the local
GP when I had quite regularly in the
winter I got bad chest infections and
occasionally pneumonia so again there
was the odd hospital admission for that
but also just the general checkups about
how I was getting on with my MA and all
that kind of stuff I want to look back I
don't I don't remember sort of massive
specific barriers but at the same time
mum and dad was more leading on getting
me to the hospital and and the day were
sort of dealing with the professionals
and I was just going along as any kid
does and not particularly a fan of some
of the things that have to happen with
the colour prism the physio that I know
the things that give you though aren't
always very pleasant I suppose but that
so that sort of broad you know quite a
lot of different services as a youngster
the big thing really for me is that when
I hear 18 these services fell off a
cliff and suddenly there were no adult
consultants locally that were aware of
SMA and there anymore
Brod neuromuscular conditions but not
specific to what I exactly have and
there was no physio provision so when I
went to university I
was probably quite happy just to not
have to do physio and go off and see the
world a bit but as time has gone on and
now in my mid-thirties and the last few
years I've started to try and get back
into having physio because I can feel
that my body needs that movement yeah
that's something sorry that's something
that I come across a lot as well is that
when you're a child you always get the
maximum support and obviously we have
our parents I think we all kind of take
for granted do you know how why should
you do and then when we get to 18 and
the change I had this as well where they
kind of owe you an adult now you know
child services kind of go go you know
away and then suddenly you're expected
to deal with things yourself and it's
such a prime part of your life because
you want to be independent you want to
get a job you also want to be healthy
you want to make sure that you can
maintain as much health as you can so in
essence you're that bit more vulnerable
and if anything because you need that
extra support and it's and it's only
it's great that you kind of came to the
conclusion that actually I need to do my
physio NEC this because it obviously did
help but you didn't have the correct
guidance from being 18 and so do you
think that maybe there was a lack of
information out there for you I mean I
know I know you just expressed that
there was probably a lack of awareness
for your specific condition do you think
that's something to do with the lack of
information that you could find online
or do you think you just kind of but
quite happy to just get by until it kind
of hit you that you needed to yeah I
think I think partly and my twenties I
just was not as tuned in to that to the
health side I was just you know too busy
partying and working and living life we
are beyond I did a little bit of just my
own journey and not being so tuned into
there I mean there are charities that
represent people of SMA and part of
their remit is to raise awareness with
medical professionals but there's so
many specific if
conditions it is very difficult for all
of the local consultants of the certain
area to know everything about every
condition so what I ended up doing more
recently as there is a guy in Oxford so
one in Cambridge it's not my local
hospital but he is one of the leading
experts with SMA and I found that to be
a good contact point just to check in
and he knows a lot more about specific
elements of SMA but then in phones like
the physio I'm particularly swimming I
used to swim along I used to love it and
it's really good for my joints and my
muscles and my health but I've really
struggled to find a local accessible
hydrotherapy pool and I'm elated
professionally I'm plugged in now
because of my job - a lot of charities
and all sorts of other you know
information points but I don't think
information is the only difficulty I
think there is also actual barriers to
the physical environment as well with
the provision yeah yeah I can imagine so
um I saw on your blog or the various
things you do you said you run a few
businesses but you obviously do your bit
kind of raise awareness or where is good
to go if you've got a physical
disability
you know what successful what's not and
that's really really cool so you're kind
of building your own information portal
if you like online so that other people
like yourself or similar can kind of go
online and find you know places that are
are good you know usable accessible
places do you think there's more that
could be done in terms of say our GPS
and what what we could maybe expect of
you know when we're growing up getting
to 18 and we want to be able to access
our health services you think there's
more that could be done for four people
at yourself and similar
yeah when I've done a lot of training
around diversity and disability
awareness yeah I I now live live
by the social model of disability so
that the overall point is that I'm not
disabled by having SMA I'm disabled by
the barriers of society and those
barriers come in the environment in
attitudes and in processes so I think
really it's about how we reduce the
barriers to the physical environment so
an example would be having a hoist if I
was to need to get out of my chair at
the hospital about the GP that would be
a way of overcoming that physical
barrier I just random example but you
can get you a seat adjust attitudes
would just be the GPS and other
professionals would feel educated and
empowered and comfortable to work with
patients and Vector comers about what
their needs are and how to overcome it
and procedurally it would be about on
that bigger strategic organizational
level that there is all of the training
and support for other professionals yeah
yeah how do you find getting around your
your local hospital do you think that
there are barriers there physical
barriers there that could be done - that
could be prevented really but there are
there is there anything about that that
you think that could be improved yeah I
mean there are other parts of society
where you literally get to say a
restaurant and there's a flight of steps
to get in and that's far more disabled
whereas most hospitals and GPS you'd
like to think of it from my experience
they are more accessible in that way
once you I'm coming at it very much from
a wheelchair user perspective but I do
see other I'm sure you'd be talking to
other people with different impairments
and they're gonna have different needs
and different barriers and yeah I would
say and also the car park like they tend
to have accessible parking you know
nearer to the door of the hospital there
tends to be accessible ooh so I think
it's all improved and I mentioned the
hoist
in having treatment and swimming as well
the other thing is that changing places
toilets are where there are hosts and
changing beds and I'd be interested how
many hospitals actually has a proper
change in places accessible toilet that
probably would be a new area that could
be improved upon
but I've also found the last five years
my fiancee is very very into natural
health and she took me from you know
very much heat and not the right foods
and that sort of stuff and she's helped
me improve my diet and having got very
unwell every winter I have now found
I've not touch wood I've not had
antibiotics for about five years and
I've not been to see my GP for about
five years so it's maybe a bit of a
tangent from the core of what we're
talking about but there is that other
side of just learning how to look after
ourselves but then obviously when we
need help having that available and
inclusively
and hospitals all over I think yeah as a
whole from from my personal perspective
there is a lot more that can be done to
support each individual and I personally
have quite a weak immune system which is
part of my Asha syndrome so I'm often
ill and yeah I must take a trip to the
GP all the time I've got a speed dial
but I think that there is that
definitely when all said and done were
all we're all individuals and we we all
need to take care of ourselves and I
think this is from an inclusive side of
things is something that everybody needs
to know about
I think healthily having a healthier
lifestyle I know there's a lot more
things about you know about going vegan
and all the rest of it there's so much
about now but I think these are things
that you wouldn't be aware of unless you
have access to this kind of information
or if people didn't make you aware of
them so it's quite interesting that now
that we get older we kind of find our
own resources and you know your fiance
you
using her own kind of knowledge and
stuff has helped you and turn you
haven't had to go back to the GP which
is a treat really really cool but I mean
there are obviously when you talk about
a heist and various things there are
quite a lot of websites now they're
trying to think that humans died and
things like that do you kind of say what
what restaurant has stairs what
restaurant has a lift or you know
leisure centres things like that which
obviously quite helpful for people with
various disabilities but like you say
every person's needs that'll be very
different and so would you rather be
able to find out information about a
place before you turn up or would you
just want to turn up and see how it goes
and in a way someone's got to do it
before you do it you know so is this
constant battle of kind of raising
awareness of what was good for everybody
opposed to just one group of people I
think it's like when I go into a GP to
hospital or doctor's the desk is very
high so I have a guy's dog and they
never notice a guide dog they never know
that you know I'm actually visually
impaired and also deaf because I have
the red and white checkered harness on
my guide dog and I find the high desks
really really inaccessible it's like
well how do you other people deal with
this with disabilities people that walk
in with crutches or wheelchairs you know
it's very matching their GP Jeanne's
office so I think there is a lot to be
done it's good that there is you know
there is there is you know some places a
target but I think that I think you've
just highlighted a lot that people
probably haven't thought about and they
wouldn't know unless unless they're
listening to people like yourself so I
think it's really really key
so Martin is there anything else that
you would like to leave with us today
and that you think that maybe we haven't
thought about that you would like to
raise
yeah got cochlear thought so States just
firing off while we're talking we
mention eight um flight I know that
access able who used to be disabled go
come at it where they just have audience
and very facts and stats so it's not
objective so it's not subjective it's
very objective and so that angle of just
as you say giving information provision
is is really powerful and there's
another our pal called access advisor
and all very similar but that will where
the community review places so obviously
if another wheelchair user reviewed a
place I would feel that's going to be
more relevant to me whereas if it's only
been reviewed by some with a different
impairment then it's not going to be as
relevant so that's about having a lot of
reviews and a lot of community action at
the potential that's quite good
but there's definitely been a more
movement into video and I think when we
go into virtual and augmented reality
there's a lot of opportunity where you
you don't have to have someone decide if
it's appropriate for you or not you
could look in advance at what the place
looks like and suss out where you might
park if you can get in the door and all
that sort of stuff
so I think technology is going to hold
some solutions in the future that's
that's a perfect example of how digital
can really help you know those those are
people like yourself and me being aware
of some of the barriers that could be
ahead and kind of how we can overcome
them are using digital so that kind of
service where you you have kind of the
virtual reality where you kind of step
into a hospital and kind of experience
it before you get there like that's
really cool I know myself I I get quite
anxious when I'm going to new areas and
things you know I suffer with a lot of
anxieties so that is something that I
think would be amazing for lots of
people not just you know in ICAST but
yeah that's a really good example and
it's good that this is being thought
about and there's it's gonna be
available
and that's really really cool and that's
kind of finishes this nice and positive
because there's actually quite nice too
I feel like there are people that talk
about when we talk about health services
and barriers and things like that it's a
bit of a rant and it's around about you
know the negatives and but I think there
is a lot of hope for how technology and
digital can really make the lives the
people with access means so much easier
especially when it comes to our health
service because I think it's just so
important you really want to you know
stay healthy we want to we want to be in
a part of society which is which is you
know not a lot to ask for really is it
good amazing have you got much else
planned today Martin you have said to
the guys I'm delivering a Pecha Kucha
presentation in Cambridge tonight so
it's 20 slides 20 seconds per slide and
I've got a team meeting this afternoon
because I don't know if you know I run
disability arisings as well so that's
more whether it's like it a major stalk
on your website yes that's kind of them
a lot more beyond my experiences is
about giving the community a platform to
support each other and to share their
story see how we've got a team meeting
at two o'clock so yeah no miss for the
wicked but oh good totally read me there
that's brilliant that's really really
good Martin well I can only wish you the
best and I'm sure like he said
throughout the beginning our paths will
cross again