Making your inclusion meaningful: A personal perspective on disability identity.

By Juliet Wood, Associate Director

One of my principles for inclusive research is to always think human. More inclusive research should be designed to help us broaden our perspectives of our audience and reach more people. Identity is fluid, personal, intersectional and uncertain – in a world of ‘tick box’ research, we need to respect that identity is not as easy to understand as this.

Yet sometimes when it comes to asking about disability it’s as narrow as ‘do you identify as disabled?’

Having lived with a chronic illness for 14 years and an ostomy bag for seven, I am someone who has fallen in and out of the ‘uncertain’ category of disabled identity. So, I’d like to take a human lens to how we ask about disability and challenge the simplicity.?

To really ask ourselves: what do we really want or need to know?

My personally wobbly disability identity journey

An exhibition my company hosted prompted me to first question my own identity language. Featured was an inclusive advertising campaign from a clothing brand, which included two images. The first was a female model who uses a wheelchair and next to it a female model who has an ostomy bag / stoma.?

Having seen the advertising featured, my partner asked, ‘how do you feel about that?’. The answer was a little confused. I’d been conditioned to think, just like the international symbol for disability, that the female wheelchair user represented disability, but what about the female with the ostomy bag? This was the media representing disability – their representation of a woman like me. It was the first time that I asked myself ‘am I disabled’?

It prompted me to really consider my own identifiers; whether I thought of myself as disabled. If I was even having to ask myself that, was that a learning in itself? I needed to challenge any internal ableism which may be driving a choice not to adopt this identifier – the societal and historically driven association of ‘disability’ as a negative word. I needed to unpick my unease around my privilege as someone with an invisible disability, and explore the disabled community, people with an ostomy bag who identified as disabled and those who do not.

So, do I identify as disabled?

I don’t personally refer to myself as disabled. The world does not put barriers up for me, my accessibility needs are for the most part met through what society already has in place, and as someone with an invisible condition I am not subject to the bias of the ableist perspective or gaze.?

The reality is I look back at my pre-surgery self, the 20-something year old who struggled to get out of bed, whose workday was reliant on pain killers and who was racking up NHS frequent flyer points. She would never have called herself disabled but with the power of hindsight I think I was more disabled then than I am now.?

While I do not believe that disabled identity is or should be confined to the notion of ‘struggle or thrive’, for the moment, I most commonly choose to say I have a relationship with disability or an invisible condition.?

We need to think of disabled identity with more nuance. Disabled identity and language is personal, and someone with the seemingly same condition may not adopt the same language. Disability isn’t always obvious: it can be hidden or masked, it can be dependent on situations, location, flare-up of conditions or moments where it has become harder to manage. Language may flex across occasions such as helping to advocate for accessibility needs where they are being overlooked or assumed.?

My point is: disabled identity is very complicated.?So, what are we really uncovering or understanding when we simply add ‘do you identify as disabled?’ or ‘Are you disabled?’ in a survey?

The ‘prefer not to say’ option often becomes the middle ground between ‘yes’ and ‘no’ but that’s not always what people feel or want to communicate.?So, who or what are we missing out on by asking only this question? Whose needs are we really serving??It becomes a tick-box exercise of limited value.?

ASK YOURSELF: WHAT IS IT THAT I REALLY NEED TO KNOW?

1. Is it information about my participants to support conducting high quality inclusive research?

• Preferred language someone wishes to use?
• Accessibility needs for research purposes?
• How to set up the research to make it easier to engage

Language such as identity or person first should be respected in in-person qualitative or quantitative research – particularly important when you have a large qual group with different perspectives.

Make the research an engaging and positive experience by asking about needs or preference for adaptive technology, adaptive communications or engagement techniques, accessibility to the building etc. As well as engagement methods such as knowledge of questions ahead of time, be more flexible with timings, allow for a carer to attend, etc.?

?2.?Is it information that will inform my research outcomes and how I innovate more inclusively? For example:

• Accessibility needs a person has which influences experience or access to products, service or environments?
• Unmet or under-met needs at a specific point in the customer journey

If you innovate or offer accessibility only on disabled identity, you will be limiting the scope of inclusion. Consider how you can question and uncover unmet needs from your products or an audience you could better speak to by going broader and asking about accessibility needs directly.?

3.?Is it information that helps me understand how my brand or comms are received? For example:

• Sense of connection to the disabled community?
• The importance of representation?

Awareness of disability or closeness to disability, whether one’s own, family or friend can impact our response to inclusive design or representation. Representation may span beyond disabled identity alone and so we may be missing out on the depth to which under- or misrepresentation exists.?

?4.?Is it a deeper understanding of the lived experience?

• Feelings of disability that are dependent on situations or points in time??
• Conditions which impact daily life e.g. chronic conditions??
• Whether participants are legally considered disabled??

Consider the depth and whether it is feeling vs. function. Do you need a broad perspective, including feelings of disability in different moments to innovate against? For example: ‘Do you consider yourself to have a disability, impairment, long-term health condition or access needs lasting or expected to last for 12 months or more?’. As a researcher, do you need a more functional perspective such as support received, needed or levels of legal protection?

So, remember…

No one’s world looks the same. Challenge yourself on your own perspective or assumptions when you design your research. If your purpose is to better represent or understand, start thinking beyond a ‘yes or no’ to disabled identity.?

But never be afraid to start somewhere. Don’t let the fear of not getting it right first time or teasing out the most important information hold back inclusion. Not including a question on disability will leave a greater gap in understanding the impact of human characteristics and lived experience, further holding back change and progress.

Adopt an attitude of learn and lean in. Bounce your ideas off others, gather opinions, bring in expertise. If you need support discovering more resources or a safe space to help shape more inclusive research then do come find us at MRS Unlimited.?

First published in Research Live: https://www.research-live.com/article/opinion/a-personal-perspective-on-disability-identity/id/5127643