Disability. It’s both a hot topic and something that is rarely adequately discussed. Despite popular campaigns and efforts to raise awareness, disabled perspectives are still drastically unrepresented, unheard and unseen. Furthermore, discussion around disability is dominated by the voices and views of able-bodied individuals rather than the narratives of the disabled.
I am autistic. Therefore, from my experiences, I can best speak about invisible disability. Disability is a broad spectrum incorporating both visible and invisible conditions. In terms of definition, someone who is disabled has a mental or physical impairment that significantly impacts their daily life. Invisible, or hidden, disabilities tend not to have physical attributes and so cannot clearly be seen by onlookers. Due to their unseeable state, these conditions can be more difficult to diagnose. *Though, quick hint: sunflower lanyards signify that the wearer has a hidden disability and may need more support.* Examples of hidden disabilities include: chronic illnesses (like chronic pain or fatigue), being neurodiverse and long-term mental health conditions (for example depression). Disability holds an infinite spectrum of conditions. Everyone’s experience with disability are unique; however, people are often just chunked together into groups and misconceptions and mistruths around disability are still found in abundance.
Each disability has its own misconceptions. I talked to some friends about their experiences with disability. One response around misconceptions that really stood out to me was about autism. She said the first thought about autism for people is of a young, white boy obsessing over trains or throwing an unprovoked tantrum. This feeds into so many narratives, highlighting one of the significant issues around disability: society tries to put disabled people in a box, however, there is no one correct answer. This stereotype may apply to a handful of individuals but does not represent the autistic population. Autistic individuals who do not fit this very rigid idea can face scepticism. It is ridiculous that being yourself can lead to you not being accepted, or even believed, simply because you do not fit into someone else’s preconceived notion of what autism is.
Many of the stereotypes around disability come from early research into the subject. A lot of research into various disabilities was conducted by straight, cisgender, white men. Additionally, the research was analysed through a very narrow, heteronormative, privileged and misogynistic lens. This bleeds through to today, with the corruption of early research impacting disabled lives in the here and now; individuals are affected by the outdated views that still run through society. Disabled people are not stereotypes! Yet, often, disabled individuals are put in boxes and suffer from outdated and narrow points of view. These have serious real-world impacts, especially on diagnosis and treatment by others.
For a variety of disabilities, especially hidden disabilities, the diagnosis process can be long and arduous. Many must endure stages of tests, waiting lists and even misdiagnosis. Getting a diagnosis can be exhausting. Every autistic person I have spoken to has experienced this. The National Autistic Society (2020) says that many autistic individuals are diagnosed later in life rather than the ‘traditional’ early childhood diagnosis. Especially so when the individual does not have accompanying learning difficulties. Symptoms deviant from the traditional criteria are ignored or characterised as something else. Since early research was tailored around young white boys, women and people of colour suffer disproportionately from lack of diagnosis and misdiagnosis. According to research at Durham University (2022), the narrow view of early research means that autistic girls today are more likely to be misdiagnosed with disorders such as anxiety.
Living with a disability can be incredibly difficult for so many reasons. Significant themes that come up when discussing the downsides of disability are the physical limitations and fatigue. Even mental disabilities are physically limiting and exhausting. The mental limitations bleed through, having physical effects. Sensory overload is also an issue, not just for people with autism. Many people with disabilities are already a couple steps closer to overload, having too much going on, pain, aches, having to try that bit harder and noise bubbling in your brain.
Disability has its negative sides. It can make life incredibly difficult for an individual, which is why there is support for people. However, it is not simply a negative thing. Disability is a complex, multi-coloured array of experiences, disadvantages, struggles, opportunities, skills and insights. When I asked people if they would want to get rid of their disability, the main consensus was that it makes things hard, but their disability is a part of them. The disability makes them who they are, and it brings positive attributes too, even if it is just a different perspective and insight. For example, one person said that being autistic made them incredibly passionate which makes them really good at working with children.
There are so many beautiful aspects of having a disability. For some, their disability gives them special skills. While disabled people may need more support, they are not stupid or incapable and do not deserve to be infantilised. Disability is like a rainbow, or tie-dye, combining many colours in many ways. So many different features, some dark and some light, all combine to create a beautiful tapestry of existence.
I asked friends what, as a disabled person, would make your life better? The outstanding response was understanding. Many said how much better things would be if more people tried to understand them. Understand that disabled people are genuinely trying, even if you cannot see their disability it affects them and though it may make things harder, they are genuinely trying. What is an inconvenience for you is hard for them too! The next biggest thing was acceptance. Not just tolerance and sympathy but genuine acceptance, loving people for who they are rather than asking or expecting them to conform to your standards. Disabled people are people just like able-bodied people. No one person is alike. No one person’s experiences is identical to another. The same is true of disability. One person’s narrative is not the narrative of the whole community. Disabled lives would be a lot better if society tried to overcome their ignorance, had a bit of patience and were willing to listen and willing to learn.
By Natasha Pooley (she/her)
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