Thursday, 4 November 2021

Challenging Stereotypes Interview

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.

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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.


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