Disability Pride Month was born in the USA in 1990, when the Americans with Disabilities Act (ADA) was passed to prevent discrimination against disabled people. It is now a global act of celebration – and an act of protest: the first Disability Pride Parade in the UK took place in Brighton in 2016.
Disability Pride Month exists to change the way people think about and define disability (and, yes, that can also include people living with chronic and recurrent health conditions)! It also aims to end the internalised ableism experienced by many disabled people, and to promote the knowledge across society that disability is a natural part of human diversity.
At FTWW, we love awareness days and months, but believe that the discussions shouldn’t stop there. We need support all year round to help make the positive changes that empower our communities.
In Wales, around 26% of people are disabled, yet many don’t realise they are ‘allowed’ to call themselves disabled! There are many reasons for this:
- we may have been policed by people around us who don’t ‘recognise’ us as disabled.
- poor representation in the media and general society means we may have a very narrow view of what disability is – and what it isn’t.
- historically, we’ve been led to believe that you have to have a clearly visible impairment or formal diagnosis to be ‘disabled’.
Society tends to view disability under the medical model. This is the view that disability is an illness or impairment, something ‘wrong’ with a person. You will probably have heard people described as ‘having disabilities’ rather than being disabled. The social model uses the latter description because it focuses on how the world around us – society – is what dis-ables us, whether it’s lack of access to places or care, people’s attitudes, or our needs being ignored.
Many members of FTWW’s community live with long-term chronic health conditions and describe themselves as chronically ill, but due to ongoing issues when it comes to female health (for example lack of research, normalising or dismissing symptoms, or long diagnostic delays), don’t realise that they actually ‘qualify’ as being disabled.
Many of those same members will be struggling at work, not realising that the Equality Act 2010 may well offer them some help because it defines ‘disability’ as inclusive of people whose symptoms have had a significant impact on their lives for 12 months, and gives them the right to request reasonable adjustments in the workplace.
The Social Model of Disability (which the Welsh Government has committed to promoting and embedding in government and public bodies across Wales) makes the important difference between impairment and disability, and has been developed by disabled people.
Whilst many of us will be ‘disabled’ by our symptoms, such as pain and fatigue, the social model both recognises this and also enables us to say, ‘hang on, my impairments, my physical or mental health issues, are not the “problem”. It’s things like not having people take my symptoms seriously, not being able to access the healthcare I need, not being able to work from home – these are the “problems” I face; these are the things, the social barriers, that “dis-able” me’.
So, whether you are one of us, have a disabled loved one or colleague, or simply would like to find out what you can do to help create positive change, read on for some of our top tips!
- Learn about – and implement – the social model of disability
Yes, we may have just mentioned it, but that’s how much the social model means to us! This fantastic article from Nina Tame explains how empowering it is:
“…Finding the Social Model of Disability allowed me to undo years of internalised ableism. It was like the moment after a terrible breakup when you realise it wasn’t you; it was them all along. I’d always thought my Spina Bifida was “bad.” Being disabled was “bad.” And somehow, being disabled was my fault or that I was an inconvenience and a burden. The Social Model disagrees. Nina Tame: Disabled is not a bad word
Non-disabled people and institutions also have a duty to understand the social model, too. Disability Wales has amazing resources on the social model and knowing your rights, using your rights and living your rights, so please take some time to read through them and help to spread the word.
- Understand ableism and internalised ableism
According to Sense, Ableism means prioritising the needs of non-disabled people. In an ableist society, it’s assumed that the ‘normal’ way to live is as a non-disabled person. Disablism is a word for negative opinions, behaviour, or abuse against disabled people. Many people use these words interchangeably.
Ableism comes in many forms; it can be violent and aggressive, or more discreet and systemic. Here are some examples:
- disabled people can miss out on jobs because of assumptions that they won’t be ‘capable’
- disabled people can be perceived as ‘scroungers’ for receiving benefits
- disabled people can be seen as ‘disposable’. You may have noticed that the phrase ‘underlying health conditions’ became mainstream during the coronavirus pandemic as a way of justifying disabled people’s deaths (disabled people made up 68% of Covid deaths in Wales)
- disabled people can find themselves being patronised or ignored, with strangers talking to the people they’re with rather than the disabled person themselves
- the assumption that a disabled person’s partner is their carer
- the assumption that disabled people are burdens to their families
- disabled people must be ‘fakers’ or attention-seeking if they ‘don’t look sick’, or if they don’t behave in the same way as someone else with the same impairment, perhaps not using mobility aids – or using different aids on different days.
Have you tried yoga?
People who are chronically ill and / or live with a long term health condition are often blamed for their poor health, or for not doing enough to stay well. They will have exercise (almost always yoga), diets, and health and wellness techniques recommended to them whether they are relevant or not. .
Internalised ableism is what we call ableist behaviour or thoughts towards or about ourselves. It is often experienced by those who don’t know about the social model and have been conditioned by the medical model to assume their bodies or minds are ‘broken’. This can result in disabled people feeling shame and having low self-esteem.
We know how isolating being chronically ill can be, and we understand how tough it is when you don’t have people around you who understand. Find your people!
You might like to join condition-specific support groups and FTWW’s online patient community, and we recommend following other disabled people on social media. Check out the #DisabledAndCute hashtag that was created by Keah Brown on Instagram for regular doses of disabled joy!
If you have been ‘guilty’ of experiencing internalised ableism, please be kind to yourself – you were conditioned by societal norms! You now have the opportunity to learn from it and teach others about it.
- End Pity and Inspiration Porn!
Disability is often represented in the media as ‘Pity or Paralympics’, with very little in between. The vast majority of disabled people simply wish to be viewed as neutrally as the next person.
Being viewed as inspirational often addresses the barriers which disable us, but does nothing to take action to remove them.
Many people are called inspirational by those who view disability as negative and life-destroying. ‘I’m not your inspiration, thank you very much” was an incredible TED talk by the late, great, Stella Young, and has gone down in legend among the disabled community. You owe it to yourself and all around you to watch it!
- If you run a business, social space or education facility, please add accessibility information to your website.
A lack of accessibility information is a disabling factor in itself. Disabled people have to invest so much time and precious energy looking for suitable venues to learn in, socialise, eat out…Please do what you can to address this at your workplace or education space.
In your accessibility information, please also include potential issues; if you have a step into your building but you don’t have a ramp, please state so (and make sure to remedy the ramp issue – you will be in breach of the Equality Act 2010)!
- You’re not obliged to share your medical information – and others’ medical information is none of your business
Taking us right back to the medical model, disabled people will often be asked what is ‘wrong’ with them, or what happened to them – especially if they use mobility aids. Often, disabled people are just going about their days yet will have people intrude to ask them very personal questions, often under the assumption that getting an answer will raise awareness.
James and Lucy Catchpole created a fantastic website, whathappenedtoyou.co.uk, from where you can order cards to hand to those asking questions. You’ll also find personal testimonies from disabled people who explain how such questions can be rude and traumatic.
You might choose to share your medical details and experiences with others and through social media, especially if you have been vindicated after battling for diagnosis! This must always be on your terms and with any necessary boundaries in place. You are allowed to say ‘no’.
So, why do we at FTWW think it’s important to celebrate ‘Disability Pride’?
Ultimately, disabled people often have to navigate a world that doesn’t think to include them or make itself more accessible to them. This means we build resilience, develop more empathy, and become creative in problem-solving. Our experiences make us who we are and often motivate us to appreciate the little things, know the worth of ourselves and those around us, and make adjustments to ensure we are living our best lives. We face ableism and stigma frequently, but we keep fighting back.
At FTWW, our members step forward to take their experiences back to health boards and policy makers and push for better; we create improved services and solutions through co-production, and demonstrate why we should be included at every stage of service design and development. After all, nothing about us without us!
We are proud to be disabled, and we are proud of our community.
If you would like to find out more about volunteering for FTWW or working with us, please email email@example.com.