Speaking Out - the importance of Disability Activism

There is a fear of disability ingrained in many of us from a young age. Being disabled or sick is seen as abnormal. Those of us with Multiple Sclerosis (MS) often deny ourselves the joy of participating for fear of being stigmatised. Disability has typically been something to hide as it makes others uncomfortable. Since some MS symptoms are invisible many people choose to conceal their disease as they worry about being treated differently or being isolated. This is further perpetuated by ‘masking’- passing as ‘non-disabled’. Invisible MS is more ‘palatable’ to the ableist world we navigate, which is perhaps why stigma is still so rife.

For centuries, people with disabilities have been treated as ‘less than’, ‘othered’ for being different physically or neurologically. It was only through disability activism that societal structures and attitudes began to shift. Despite this, people with disabilities still inhabit a world which is largely closed off. Ableism – discrimination or bigotry against disabled people – plays out through the language we use, lack of accessibility and how people with disabilities are related to in everyday social situations.

Sharing an MS diagnosis forces an honesty but, because of pervasive stigma, there is also a fear of judgement. I naively thought if I controlled my narrative, people wouldn’t judge me. But sometimes they still do. Since people can’t see my symptoms, my MS is often dismissed. Initially, I worried that by being so open I wouldn’t be considered for certain job roles and my capabilities would be questioned.

Businesses must take more action to adhere to their legal obligations and to ensure disabled people are given equal opportunities to partake in the same way as their non-disabled employees. They must make workplaces accessible to those who need to use wheelchairs or mobility aids and allow for flexible working hours. It is not people with disabilities who should have to rise above the challenges, it is society that needs to respond and accommodate us so we can carry on with our lives and are not be forced to ‘overcome’.

Language around disability also contributes to discrimination. Ableism and prejudiced language is used for ‘othering’ and presents ability as unequivocally linear. Disabled people are often spoken of as ‘vulnerable’, ‘weak’, ‘helpless’ or ‘incapacitated’. Even the word ‘disability’ is the opposite to ability; we are either able or unable. There is a sense of shame around disability and illness because we absorb ableist language through our environments and daily experiences.

The language in the media around disabled people’s stories can be incredibly harmful and this is something we must challenge. People with MS are either depicted as sufferers or stories are of people with MS overcoming their disabilities. This battle narrative is a time-honoured trope. Those of us with illnesses are portrayed as warriors, battling through the days of our lives. Just reading that sounds fairly exhausting! MS isn’t a club many are vying to join but I don’t think dressing it up in euphemisms from a Knight’s Tale makes it any easier for people getting on with their lives.  Although we do need inspirational stories, my life isn’t exceptional just because I’m somehow living it. Success to some people may mean conquering their MS but for me, it’s about learning to accept it. It can be tough, but I think of MS like an unwelcome guest, occasionally stealing my resources and taking up space in my body. It’s just something I now live with. For others, it may be different, which is why talking about it is crucial for greater public understanding.  

Whether you call yourself ‘disabled’ or a ‘person living with MS,’ let people know. For some, it is a personal choice and more education should be done on acceptable language, even though it is ever-changing. Many terms no longer hold place in society, such as ‘wh­eelchair bound’ which implies someone is confined to their wheelchair. This is incredibly discriminatory and disempowering for the individual. Advocating for more inclusive language is essential. Much of the language we use is rooted in misunderstanding and old value systems that never included people with disabilities as equals. People are scared to say the wrong thing and informing them of the reality is a great way to eradicate these misconceptions.

The lack of understanding over what constitutes MS contributes to the stigma associated with the disease overall; 46% of people in Ireland don’t really know what MS is. As Ireland has one of the highest incidences of MS worldwide, we should be leading the way in our activism. But we aren’t. Not only is Ireland yet to sign a protocol to enable disabled people to make complaints to the UN about rights violations, but last year discrimination against people with disabilities accounted for more than 50% of all calls to the Irish Human Rights and Equality Commission. Clearly, we have a long way to go to improve disability rights in this country.

Speaking up can empower people from minority groups, people who are so often hidden, silenced and deeply misunderstood, to have their voices heard. Disability activism can and has changed laws and policies detrimentally affecting those of us whose needs are routinely dismissed by mainstream society. Yet, more collective advocacy is needed to eradicate practical and social barriers, whether we take to the streets, partake online or speak to friends. Speaking out for yourself and others is incredibly important to eradicate stigma around disability. You can change people’s perceptions. In doing so, we can educate society, create real change for people with disabilities and make our world a more accessible place for everyone.

For more on the activism that changed our world, see Disability History: The Disability Rights Movement

Explainer

Othered/othering: Othering is a process whereby individuals and groups are treated and marked as different and inferior from the dominant social group. Disenfranchised groups such as women, people of divergent ethnic backgrounds, working-class people, LGBTQI+ people, or migrants may all be othered and, in consequence, suffer discrimination.

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