Hello all.
At work I'm co-chair of our staff network for people with disability. During October there was a series of interviews with people from under-represented groups, which included one with me covering disability. I have repeated the interview here:
Challenging stereotypes:
Interview with Adam Lawrence
As part of National Inclusion Week, we’re publishing five
interviews throughout October with colleagues who have been subjected to
stereotyping to help shine a light on their experiences and what we can all do
to support them.
This week, we’ve spoken to
Adam Lawrence, who is an associate in our Infrastructure business,
co-chair of our Enable network as well as chair of the HSP (Hereditary Spastic
Paraplegia) Support Group - a small charity providing support to those in the
UK with HSP.
In our short interview below, he
talks about living with HSP and the experiences of being stereotyped as a
result of being in a wheelchair.
Hi Adam! What can you tell
us about your condition and the kind of stereotyping you have experienced?
I have the rare neurological
condition, HSP, which is a slowly progressing condition that causes nerves in
the spine degrade. This affects the mobility of most people, as well as often
causing pain, fatigue and bladder problems.
HSP is actually an umbrella term
- more than 90 different types of HSP have been identified to date. Because HSP
is a rare disease, it’s not known by many healthcare professionals. This means
information is hard to find, many have a long diagnosis journey, and people
often feel depressed, isolated and frustrated.
My type of HSP is dominantly
inherited, and I’ve inherited it from my mother. I’ve been showing mild
symptoms for the last 5-10 years, but I don’t yet regard myself as disabled and
have not directly encountered many stereotypes. My type of HSP is unlikely to
affect my cognitive function or decrease my lifespan – although, I’ll
increasingly need to use mobility aids and will require modifications to be
made at home in the future, much like I see with my mother.
I’ve been blogging about my
experiences with HSP since 2010 as well as running an annual survey for people
with HSP since 2013. I have the collective experiences of some 1,500 people who
have answered my surveys over the years, some 400 members of the support group,
and the views of others with HSP in various private HSP social media groups.
I haven’t really experienced any
direct stereotyping – some who have observed my ‘interesting’ gait assume that
it’s the result of an injury. However, when someone is in a wheelchair people
often assume that the person is completely unable to walk and are surprised
when the person gets up and does something different. Others assume that the
person in the wheelchair is less able to think and/or communicate and find it
difficult to hold a direct conversation with that person.
Many make assumptions about what
someone can or cannot based purely on their wheelchair, assuming it to be a
burden on life. Using a wheelchair can give the person the freedom to travel
where they like, and free up energy which would otherwise have to be spent
moving at low speed and great effort.
How do you think these
experiences can affect somebody at work and in their personal life?
I haven’t experienced anything
negative at work, but I’ve read lots of stories about people who have been made
redundant as a result of their HSP. People with health conditions or
disabilities often fear that they will be perceived in a way they don’t want
should they declare their diagnosis.
Many are frustrated by not being
able to do what they once could do or are prevented from doing what they wish
they could do, affecting their outlook on life. The challenge for me is
balancing the amount of time I spend helping in this area against spending time
looking after my own wellbeing.
How do you usually
challenge stereotypes?
I like to focus on facts and
details and understand how stereotypes are formed – stereotypes are often
formed from a lack of knowledge and challenging at the start helps dispel them.
My main focus however is to help those with HSP to be more confident about
themselves and to try to do more on their own terms - credit to Ellie Robinson
for this concept!
How can our employee
networks, colleagues and the business support those who are facing challenges
around being stereotyped?
The employee networks are
important because they show to the whole company that we’re accepting of
everyone. They provide a safe space to share and let people know that there are
others like them in the company – this in itself helps reduce feelings of
isolation or uncertainty.
And finally, why do
you think it’s important that people do more?
Those with disabilities have as
much of a right to enjoy life as everyone else. We need to challenge the biases
and practices that so frequently put those with disabilities into a “second
class” lifestyle when really everyone should be travelling in the same class.
Society puts up many barriers, and most of them are unnecessary. Change is
needed, and change doesn’t start without action.
******
Post interview note, Nov 2021 - When I did this interview I estimated the 1,500 people who had answered my questionnaires, out of some 1,700 answers in total. Subsequently I completed a more in-depth analysis. In practice I have around 1,100 different people who have answered. This is a positive result because it means I have more longitudinal data points - there are around 350 people who have answered more than one survey (giving 950 answers in total) and around 750 who have answered any survey once.
