The way we talk about disability matters

I am not a Multiple Sclerosis (MS) “sufferer”. Having MS isn’t always a pleasure trip, but I’m not a living tragedy, a daily lamentation for the masses. Language matters. Being described as an “MS sufferer” highlights the ableism of a world within which I had previously lived as a non-disabled person. A world which meant never being described in disparaging or belittling terms on a daily basis.

“Ableism” is prejudice against disabled people. Most of the time people don’t even realise they are propagating discrimination, as much of it is rooted in ignorance and misplaced compassion. There is a fear around disability. It has been portrayed as something to ridicule and shun, not to be embraced and understood. Societal pressure around fitting in means that if you don’t squeeze yourself into a mould, you’re ostracised. Difference, physically and/or neurologically means people are left on the fringes, and language plays a huge role in perpetuating these damaging perceptions.

MS awareness ribbon

Ableism in language is used for “othering”—even the word disability is the opposite to ability. Desired versus undesired. We are told we are either able or unable, as if ability were linear, which is absolute nonsense and only creates shame and inferiority. “Able-bodied” doesn’t even take into account those of us with invisible disabilities/illnesses. There is a monumental failure to depict our bodies and minds as diverse. In this, many people choose not to disclose their MS diagnosis because our capabilities are so often questioned afterwards.

Disabled people are consistently pigeonholed, spoken about as weak or incapacitated. The cultural narrative of MS is concentrated on the wheelchair, a lazy stereotype as MS is often invisible. The use of expressions like “wheelchair bound” imply someone is basically being held hostage by their chair. It is also in seemingly benign phrases we use every day like “they don’t have a leg to stand on” and “turn a blind eye / deaf ear to”. I am definitely guilty of this, but we have such a varied language that we shouldn’t have to use someone’s disability as an idiom.

Disabled people’s stories are underrepresented and even when they are, the language used can be detrimental. The media either sell the narrative of Dickensian suffering or stories are of people overcoming their illness or disability. The banality of our everyday lives presented as extraordinary; “inspiration porn” for the soul. The term “MS warrior” is also bandied about like I were some kind of mythical legend. We dress things up with euphemisms to make illness more palatable, as if being likened to Zelda somehow makes having MS easier. Perhaps for some it does. For me, the analogy of people with chronic illness or disability fighting a battle is reductive and patronising. As if by simply fighting hard enough we can rid our bodies of disability or illness. If that’s the case, I should sign up to UFC.

The imagery and storylines used in films can also be unreflective of lived realities. Disabled people tend to be mocked, pitied or feared. In Avatar, the lead character, Sully, uses a wheelchair but goes to the extreme of becoming a gigantic, able-bodied blue alien in order to live a fulfilled life. Living with a chronic illness and/or a disability can be tough but it shouldn’t be constantly attached to sorrow.

Winnie the Pooh covered neurodivergent characters better than most children's programmes

Subliminal messaging around disability in children’s programmes is just as problematic. Captain Hook is a scary, evil amputee, and even kindly Quasimodo was a pitiful character. There are exceptions, like the characters in Winnie the Pooh and Finding Nemo, and of course, Shrek and Princess Fiona. He’s an ogre and she chooses to remain one, none of the transformative Prince Charming tripe here. Children have limitless imagination and are naturally curious, so normalising difference is really important, because none of us are the same. So often children with disabilities are left out of the narrative and denied the joy of participation. To that end, mainstream schools should also focus on catering to all students, separating those with disabilities further compounds this disconnect and othering. Basic sign language should be taught more broadly as well. It’s a universally recognised language.

Of course, language is ever evolving. Nowadays, there are the obvious insulting terms which are no longer tolerated. Yet, there has long been an awkwardness with saying it like it is, polishing words like disabled with terms like “special needs”. Many in the disabled community have strong opinions on the language used to describe them but there are nuances. For example, there are those who prefer to use “disabled” over “people with disabilities” choosing to take ownership of a word that has long been used to stigmatise. Ultimately, if we are going to label a specific group, language needs to be accurate, inclusive and differentiated.

I say “I have MS”. MS doesn’t form my identity, it’s just something I live with, like an acquaintance who has outstayed their welcome. There will always be a concern over disease progression and an uncertainty around the future. My symptoms creep in and out unannounced, as appreciated as a fart in a spacesuit, to quote Billy Connolly.

I am still learning; a “tourist” in a world occupied by those who have had to live with ableism and discrimination their entire lives. Disabled people navigate an unaccommodating world. There is a fear of saying the wrong thing but the more we share what is acceptable, the more we erode the stigma. Language can be used to deride or empower. We should celebrate and cater to diversity, the world would be a very boring place without it.

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