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LIFE HONESTLY

What it’s like to be a young disabled woman in the UK

June Eric-Udorie speaks to four women about the impact their disability has had on their lives and the future they’d like to see

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By June Eric-Udorie on

Being a black, queer, disabled woman is often exhausting. As a woman with an “invisible” disability (I’m visually impaired), I am faced with a deluge of microaggressions on a daily basis, particularly at the university where I’m studying. People laugh at me when I can’t see in class and read things wrong; I’ve been refused the accessibility seats because I don’t “look” disabled and other students have even proclaimed it’s unfair that I get extra time for tests or exams, because I’m "smart”. These examples only scratch the surface of the reality of being poor, black and disabled – never mind having to use public transportation even when it’s not accessible, struggling to read menus and generally feeling like the world wasn’t designed for people like you. Sadly, these stories are all too common for disabled women in the UK today.

The reality is disabled women are disenfranchised and discriminated in myriad ways. In 2017, an inquiry by the United Nations found that the UK was failing to uphold disabled people’s rights across a range of areas, such as education, work, housing, health, transport and social security – and this disproportionately affects women.

According to the Equality And Human Rights Commission, 35% of disabled women in the UK are paid below the national living wage. In fact, disabled women are increasingly likely to be victims of domestic abuse and violence. Tragically, nearly half of all female prisoners (double the rate for male prisoners) report attempting suicide.

To help understand the challenges facing disabled women in the UK, and the path forward, I spoke to a number of young women about their lives, the impact of their disability and the future they’d like to see.

Here are four of those women, in their own words, speaking about their disabilities, how it affects their lives and what they would like to change.

Annabel Ashalley-Anthony, 28, NHS administrator, London

There is a multitude of ways in which sickle cell has made me feel marginalised. For instance, recognition: sickle cell is an “invisible” disease, that is to say I don’t “look” (in society’s general depiction or, rather, expectation) as someone should look when they have a disability. I can, for all intents and purposes, appear to be healthy when actually I’m really sick. There is a lot of stigma surrounding sickle cell. To be frank, it is known as a “black people” or a “people of colour” disease. Not enough is known about sickle-cell anaemia – I have had doctors ask me when it was that I caught sickle-cell anaemia, which is, in fact, an inherited disease, and thereby I can only have been born with it. The lack of knowledge surrounding sickle cell both from healthcare professionals and the general population is quite dangerous.

Living with sickle cell is not easy – it is threaded through every aspect of my life. It has affected both my social and professional life

Living with sickle cell is not easy – it is threaded through every aspect of my life. It has affected both my social and professional lives. I am only able to work part-time due to being sick and there are some social gatherings I simply cannot attend.

There is a near-endless list of things that I would like to see changed in the UK when it comes to being a disabled women, but the most pressing thing is education. Teaching people, especially children in schools, about tolerance when it comes to individuals who have a disability is the first step. Furthermore, educating them about how and why certain people look or act differently can go a very long way in bridging the gap.

Zahra Clembintson, 21, freelance writer, Norfolk

I have spastic diplegia cerebral palsy. This means I use walking sticks and a manual wheelchair to get around; I’m only able to walk short distances.

I think being disabled has given me a greater awareness of ableism in society, something I may not have had if I wasn’t disabled (although being disabled doesn’t automatically makes you incapable of being ableist, unfortunately!). It makes me sad to think that I might not have been so aware of ableism, and the prejudice and discrimination disabled people face, if I wasn’t disabled.

One of the hardest things about life with a disability is the amount of forward-planning and the subsequent lack of spontaneity navigating the world this can involve. A train journey involves at least 24 hours' notice in order to guarantee access to an accessible space and assistance on to the train (although even giving this notice is never a guarantee that you’ll receive these things). It’s the same for taxis. It’s practically impossible to book an accessible taxi just by ringing up on the day or using an app. Many taxi fleets don’t have many accessible taxis, so it’s luck of the draw as to whether you can get one. When I was at uni in Leeds, many of my peers would use Uber to get around, but I could never get hold of an accessible car and the drivers would often refuse to take my wheelchair. I often can’t just decide to go into a restaurant or café on a whim – I have to see if it’s accessible first.

Another hard thing about living with a disability is the awful messages about disability that surround you: the idea that disability is a terrible thing; that disabled people are a burden; or that you should want to strive to be abled or at least as non-disabled as possible; and the idea that disability (not ableism) is something to overcome. All these messages say to me that society doesn’t think I should be happy with the body that I have. It’s a really hard thing to live with.

For me, particularly as a disabled mixed-race woman, it’s hard sometimes to see people in the disabled community be sexist/racist/homophobic or ignore issues faced by other marginalised groups, as if disabled people don’t face these issues, too. It’s very hard to see disabled people rightly call out others for ableism or not including disability in their discussions of inequality, but then ignore or perpetuate sexism, racism, homophobia etc. Overall, I think the hardest thing about being a disabled woman is the overwhelming sense I get that society just expects me to accept being treated unfairly due to being disabled and female, and that it’s OK for ableism and sexism to go unchallenged.

For me, particularly as a disabled mixed-race woman, it’s hard sometimes to see people in the disabled community be sexist/racist/homophobic or ignore issues faced by other marginalised groups

In the future, I would like disability and ableism to not be left out of discussions of inequality, diversity and oppression experienced by marginalised groups. I would also like for the disability-rights movement to be more intersectional, acknowledging the experiences and issues faced by disabled people with more than one marginalised identity. Finally, I would like issues faced by disabled women to be more prominent in discussions of women’s rights and for feminist spaces and campaigns to be more accessible to all, for example by holding feminist events in accessible spaces and by producing resources that are accessible to all, such as easy-read documents for women with learning disabilities, captions and audio descriptions on video content and transcripts for audio content. Online forms of activism should also be more widely accepted as “real” activism, as it’s often one of the only ways disabled women can get involved in activism.

Billie Dee, 29, head of public relations, London

I live with borderline personality disorder (BPD) and complex post-traumatic stress disorder (C-PTSD). My BPD can be described as “lacking a layer of emotional skin”. I can go from really happy and bubbly one hour, and be triggered into feeling suicidal the next – I live with extremely unstable moods. Sometimes it can be so overwhelming that I lose the ability to function: I can’t eat, get out of bed, leave my house or speak to anyone. In the past I’ve turned to self-destructive behaviour, alcohol and substances to try to cope and have some control over my moods, but thankfully I’ve been in recovery since May and getting help through group support meetings.

When people hear the term “personality disorder”, they can freak out and jump to conclusions. There is a lot of really awful, negative stigma around BPD, from both the general public and, more shockingly, mental-health professionals. There is a stigma that people with BPD are difficult, manipulative, dramatic, unstable and generally unpleasant to be around. When I was first diagnosed about 18 months ago, I called every therapist within a 20-mile radius and they all refused to help me or didn’t respond to my request. I made about 30 calls. It’s so hard to stay motivated to help yourself and try to be positive when you receive that kind of appalling reaction from people. When I tell people about my other mental illness, C-PTSD, I am mainly met with sympathy and kindness. But that illness is easily managed; it only really affects my sleep and anxiety. It’s the stigma around personality disorders that makes things so difficult.

I have had an amazing career, and lots of that is down to my mental illness. It has equipped me with skills that “normal” people would take decades to master – I’m extremely emotionally intelligent; I have a lot of empathy, resilience and passion. Those skills make me naturally good at my work – public relations – which is often an emotionally charged balancing act between the journalist and the client. Where it has had a hugely detrimental effect is relationships. I only have one stable friendship in my life and, even then, that person has had to pull back when I haven’t managed my illness well and it’s made life too difficult for them to deal with me. I don’t have a boyfriend – I’m too scared to. I’m not really sure how to “be”, and I don’t trust myself not to sabotage it. My illness causes me to think in black and white, swinging between idealising someone and demonising them, and I find it hard to find any middle ground. When it comes to meeting new people, I am often paralysed with anxiety.

We urgently need to see huge investment in social care and a shift in attitude in our cultural perceptions of disabled people and women

Although mental-health awareness has become much better in Britain over the past few years, there seems to be a lot of empathy for the more common illnesses, such as anxiety and depression. However, the stigma around serious mental illnesses, such as personality disorders, psychosis and schizophrenia, is worse than ever. I want to see that change. With regards to women specifically, I think there is a preconception that when we speak about our mental health, we are “just being dramatic” or “hysterical”. That kind of belittling of women’s mental health is really common and seriously detrimental.

I also think the way that black people with mental illnesses are treated in Britain is disgusting. My friend was sectioned in a psychiatric hospital just a few months ago and it was the most horrendous thing. A police riot van turned up at their home on a Saturday morning (they have a young child at home, too) and they were forcibly carted away by six or seven police officers in front of all their neighbours and then detained – without a formal assessment – until the Monday morning when a specialist was available. They weren’t able to call anyone for help or even access legal advice. When I went to visit them on the secure psychiatric ward, 90% of the inpatients there were black. Cultural differences are misconstrued as illness, black people are wrongly stigmatised as “dangerous” and brute police force is used instead of compassionate care. It really is shocking to see it first-hand, and really very frightening.

Frances Ryan, 33, journalist, Nottingham

Being a disabled journalist definitely makes the job harder in some ways, from not being able to get to events to meet editors because you’re fatigued (I have muscle weakness and use a wheelchair) or finding it harder to nip to a TV studio because the train system wants you to book wheelchair assistance 24 hours in advance. But I think it also helps in some ways, too. I’m sure my disability, as well as class background, has helped shaped the sort of stories I cover; a great deal of it is trying to expose inequality, as well as elevating the stories of the people affected. The British media is still hugely dominated by white, non-disabled middle-class voices and it’s great to be able to bring a different perspective.

Social-care cuts are having a horrendous impact on disabled people’s lives and, like many cuts, it’s particularly hitting women. While some disabled women are losing even the dignity of going to the toilet when they need, female family members are also the ones most likely to have to plug the gaps as unpaid carers. We urgently need to see huge investment in social care and a shift in attitude in our cultural perceptions of disabled people and women. After all, how many non-disabled people would be expected to not leave the house for weeks on end? How many men would be expected to give up their careers to care for loved ones?

I think domestic violence is another key issue – both the prevalence and provision to address it. Disabled women are twice as likely to be victims of domestic abuse, but a recent survey by the BBC found only one in 10 refuges in the UK are accessible to people with physical disabilities. As a start, I’d really like to see disabled women brought into mainstream conversations about domestic violence. We should be at the forefront of it.

These interviews have been edited for clarity

@juneericudorie

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