This was published December 2021.

International Roundtable

Back at the end of September, we held an international disabled sisters roundtable with some amazing speakers – Virginia Ossana; Carmen Yau; Mali Hermans; Rachel O’Brien; and Eleanor Lisney.

The event was recorded and now available on YouTube, and is also embedded below!

P.A.s and Consent

“There was an incident. I’ve had to end someone’s contract, which was awful. For confidentiality, I can’t tell you the details.”

That’s what I’ve been saying for days, to anyone close enough to know both people involved. This is what really happened.

I hired a PA I shouldn’t have. I saw red flags at interview, and I doubted myself. I’m aware I’m not a trusting person, and that my instincts can be wrong, and so I chose to give someone the benefit of the doubt.

Fast forward 6 months, and I’m crying and shaking behind my laptop, trying not to make a sound, desperately asking friends what to do.

All because the PA lay their arm on my breast when washing my face. This doesn’t sound like a lot, and I spent a long time telling myself to stop being “silly”, it’s nothing.

The reason I felt like this was because it wasn’t nothing. It wasn’t the first time, or the 20th time. It wasn’t something that could be avoided by careful explaining, because I’d done that. It wasn’t because the person didn’t know that you need to be respectful around other people’s bodies, and in particular the 3 Bs: Boobs, Bums, and Bits. I’d explained that, awkwardly but properly.

No, I was shaking and crying because non-consensual touching is icky.

The more it happens, the more icky it is, and if it’s any of the 3 Bs, it’s extra ick. I don’t think anyone reading this would disagree with this.

Though the PA did. “I didn’t mean to”; “I don’t know how to do that”; “I forgot”. The first several dozen times, I listened to that, and gave her another chance, and another, another. And each time it felt more ick, until just the sound of the PA’s voice made me start to feel panic.

Luckily, I have good friends, who were able to advise me and seek further advice on my behalf. They told me I didn’t have to go through that indefinitely. They told me it was OK to trust my judgement, and they would support me regardless of what decision I would make. They didn’t downplay it or ask unnecessary questions. They gave me the facts, and a bucket of empathy, and made sure I took care of myself and took that as a priority. It was gross misconduct, which means the PA has been fired. I’m safe now.

Why? Why did you do this? I kept wondering. Then someone with a similar experience asked me if they were consciously or unconsciously getting something out of it. I remembered the smile on the PA’s face when being too hands-on, and the movements of their touch. Yes, they enjoyed it. I can’t say exactly why or how, but they were getting joy out of something that made me feel uncomfortable, and continued to do this after being told many times that it wasn’t alright to do this. Icky.

I’m writing this because I hope it’ll be useful to someone else. The more trusted friends I spoke with, the more it became obvious that I was not alone.

To prove this, I asked SoF to put up a Twitter poll. The results speak for themselves. This happens. A lot more than we’re willing to talk about, and a lot more than we deserve.

I’m not upset and scared anymore. I’m angry. Angry at the PA for behaving that way. Angry that my friends have also had to deal with similar experiences, and much worse. Angry at myself for not acting faster. Angry at being angry. Angry at the silence, which needs to be shattered. Angry that there are no guides or support resources to be easily found.

This is going to change.

Invisible

I’m part of a number of communities, groups in which I gain support where we have solidarity with each other because we share common issues. Those communities exist because of need very often because our needs are not met or recognised by society in general and we experience discrimination. Strangely, I have often experienced invisibility within two of my core communities while also failing to be recognised as Queer or disabled by people outside of those communities.

As a Femme Dyke and a person with so called ‘invisible’ disabilities I often go unrecognised both in my own communities and in larger society. In the Queer world people use the flawed term ‘passing’ to mean being perceived as heterosexual or cis-gendered. As a person with so called invisible disabilities I’m often told how well I look, I ‘pass’ momentarily. Sometimes invisibility can shield me from verbal attacks or physical danger aimed at queer or disabled people, but invisibility does not change who I am or the impairments I live with. Invisibility can be an erasing and undermining experience.

As a Femme Dyke and a gender queer person, I’ve been told ‘Never in a million years I would have dreamed you were gay’. Coming from another queer person that statement makes me wonder exactly what it is they expect to see? Meanwhile being invisible as queer in the ‘Straight’ world can be disorientating while providing glimpses of the casual homophobia that people engage in.

Years ago, when civil partnerships became legal for gay people, I remember going into a Newsagents; magazines were laid out on the counter one featuring a picture of Elton John’s big GAY wedding. As I paid for my purchases the owner of the store pointed to picture and asked ‘So what do you think of this?’ I assumed he was asking me because I was gay. My girlfriend of that time was standing next to me, the shop keeper nodded to her and said ‘Alright Geezer?’ I was wrong, he had assumed we were a straight couple! Pointing at the gay wedding picture again he said ‘I don’t think it’s right’. I replied icily ‘I’m gay and you are homophobic’.

Gay marriage beyond civil partnership did not become legal for a further nine years in 2013. When I was a teenager, in the country I grew up in it was illegal to be gay. Invisible or not I cannot forget these things.

In terms of chronic illness my invisibility has meant being denied treatment, I’ve been told by gatekeepers that there is ‘nothing wrong with me’ or that I am ‘not sick enough’, bullied and gaslit in a healthcare system where treatment is rationed. After living with Hep C for thirty years which hugely impacted my health I bought generics online, a cure I had not been able to access via the NHS.

Only recently has the publication of new NICE guidelines for ME/CFS removed graded exercise therapy and CBT as direct treatments. Perhaps now we might see a change in the attitudes of health care professionals who for decades implied that the illness was all in our minds. Those attitudes of denial lead me to doubt myself, to push beyond energy limits, to fail and think it was all my fault. Invisibility meant people in positions of power felt free to act as if I was asking for special treatment rather than reasonable adjustments. I’ve been sneered at for asking to use the lift, or asking for quieter environments so I can hear and focus on what is being said. Once when I was in a lot of pain and having difficulty finding a way to sit comfortably, I was stared at and asked if I’d ever had a real job!

My experiences as a Femme Dyke and as a person living with chronic health conditions both illustrate of how not fitting expectations – being invisible – can result in discrimination. As I write I find myself worrying that people will read this and think I’m making a fuss about nothing! Because invisibility often means being asked what I’m complaining about.

Fortunately, the other side of the equation is the communities of visibility I’ve found, those who share similar experiences to mine. That amazing feeling of recognition of not needing to explain feeling affirmed and as if other people really ‘get’ me. Communities of shared experience have nourished me, helped me to recognise my struggles as political and social issues. Helped me to learn skills, to value who I am, to celebrate and have fun together. The recognition and support of community has helped give me strength to fight harder in the outside world. To speak up against sexism, homophobia, transphobia, ableism, to advocate for my own care, to believe in my own voice and rights!

Finally, my complex experience as an ‘Invisible’ has given me perspective to be able to question assumptions, to think about what is recognised and validated. To consider community beyond visible categories. To feel sure that just as I’ve experienced discrimination and exclusion due to things that others don’t recognise, there must be things I too am not aware of. To ask myself what listening and patience I can practice to learn about others visible and invisible lives, and in doing so make society a richer and more accessible space.

Abortion is a Disability Rights Issue

Maybe that instinct is perverse, but I think of it as asking for

a world in which a woman who doesn’t

have children is worth as much as a woman who does. [1]

I was born in the early `80s, while the World was changing its course, but it feels like life was easier, even though times were harder. You might say that life is always easier when you are a child, which is true, but disability changes the perspective. Being born with a genetic, congenital illness made me more attentive to the surrounding world since I was a kid. I was aware of my otherness, as I was taken from one specialist to another, searching for the answers about my condition. When kids were going to school, I was home-schooled. Rehabilitation has always been more important to my family, so everything had to be subordinated to this. Being surrounded by specialists, therapists and other patients, mostly adults, made me mature quicker. I was happy by myself, playing alone or with surrounding adults.

Growing up, I wasn’t much aware of my body changing, maturing. I was transforming into a teenager, my shapes were getting rounder. I still felt like my body wasn’t really connected to my mind, to my self. It wasn’t my identity. It was a body, that was handled by others — it was transferred, moved, turned, dressed, etc. Even during medical procedures, which required undressing, I wasn’t abashed. Like my body wasn’t truly mine. It was just an object my self was attached to, probably by accident. Nowadays, I’m more attached to my body, though it’s not a fixed connection and it’s usually connected to an erotic experience. Still, it’s my body and I decide how it should be treated.

I exactly remember the moment, when I’ve heard the news about the decision [2] of the Constitutional Tribunal of Poland. It was 22nd October of 2020 and I don’t think I’ve ever been so angry and disappointed in my life. I was angry because women were stripped of their laws. I was disappointed by the government, by the country. I’ve never been a supporter of the current government, but I hoped they have some decency left. Apparently, I was wrong.

Women all over the country went ballistic. It didn’t matter if they had a disability or not. That abortion ban has moved everyone. As a woman with a disability myself, I was shocked that anyone in their right mind can think that giving birth to a child with fatal defects is humane. I have never thought about having a child. I need a lot of help in my daily life, so adding a child to this equation would be too much. Adding a child to this world, where everything is falling apart, would be extremely selfish, too. My first reaction to the abortion law was a short text I’ve posted on my Facebook wall. I didn’t expect it will cause a reaction it did. My general point was that we, as women, need to have a choice. We are not empty vessels, which can carry any kind of foetus. We are human beings who can feel pain and emotions. I’ve also added that disfigured cluster of tissue is not a child, it’s just an alien growth in a woman’s body. What caused the greatest outrage, was a statement that I wouldn’t be surprised or angry if my mother had aborted me if she knew that I’ll be born with a genetic condition. At that time, she would be able to abort the pregnancy, even though we consider the `80s times of oppressive regime. How do we call the present government then? Not a democracy for sure.

Women with disabilities are treated as asexual beings. We have difficulty accessing medical care, especially gynaecological care. It’s not only about architectural inaccessibility, but also lack of willingness from the medical team. How can a woman with a disability have sex or be pregnant? That’s not how it should be. A lot of women are also too embarrassed to visit a doctor, considering they will need someone to help them before, during and after the medical exam. After all, our intimate parts and sexual life are the most private thing. Not being able to get regular exams is an act of violence. Not many people realise how harmful it is to neglect one’s health.

After a year of women fighting constantly with the government and pro-life activists, we get a possibility of new oppression. Proposed changes criminalise abortion and threaten both women and medical team with murder charges [3]. What kind of absurdity is this?

Not every woman wants to be a mother. Pushing women to become mothers, no matter the circumstances is a violence of the worst kind. No one will care about the actual child, which was born with an illness, birth defect or disability. It doesn’t matter its mother will be going through hell, without institutional support. Polish government cares more about the foetus, wasted sperm and eggs than a real human being. Woman with a disability can also give birth to a sick child. What if she didn’t want it? A women with a disability can be raped, taken advantage of, can be left alone. Pregnancy is not a walk in the park, it can be dangerous, in can be lethal. Does anyone care? No.

Violence and oppression have many faces. Being born as a woman with a disability puts you lower than others in society. Such a person is being oppressed right from the start. You have to fight your way through everything and prove yourself better than others. Poland has nothing to offer to you. You can go rot somewhere in a corner, because you were worth more as an unwanted, defective foetus than you are now, as an educated, tax-paying adult with a disability. We, women, won’t stop our fight until this situation will turn around and actual human being will be worth more than a ball of random cells. I hope this will happen one day and I’ll be still around to see it.

References

[1] Merrit Tierce, The Abortion I didn’t have, The New York Times Magazine, 02.12.2021
[2] To learn more, please read this article from the MS magazine
[3] The project to criminalise abortion was rejected by the Parliament on the 3rd of December 2021, though it doesn’t mean we are safe.

On Assisted Dying

TLDR: Assisted Dying would put women, disabled women, and other marginalised groups at risk. We can do so much better, and deserve better.

In May 2021, Baroness Meacher proposed a bill that legalised assisting someone to end their life. As a feminist, and a disabled person, I oppose this.

As the law stands at the moment, doctors can’t kill people. They’d lose their right to practice medicine, and be tried through the criminal justice system. The Assisted Dying bill removes this, and creates a specific set of circumstances where doctors can take a life, if that person feels they no longer want to live.

Outside of these specific circumstances, a person who expressed that feeling to a medical professional would be offered access to appropriate mental health support. They would be listened to, and the aim would be to create a situation that allowed the person to feel that they can live the time that they can.

Some reading the above might snigger at my apparently rose-tinted view of how people are supported. Yes, I know that mental health services are under-funded and somewhat patchy in availability and quality. This on its own is an argument against Assisted Dying – we’re already failing some people who need mental health support, so offering someone that option after perhaps years of lack of access to appropriate mental health services is not kindness, but further negligence.

What are those specific circumstances described in the bill? At the moment, the person asking for assistance to die must have a terminal illness with a life expectancy of less than 6 months and must have the capacity to make that decision.

But who, in reality, would this impact?

Workers and family members

I’ve read arguments in favour of AD/AS which state that it would reduce the workload on women – female nurses, care workers, and family members who are more likely to be supporting the person with their needs, everything from fetching a glass of water to giving pain meds to organising finances.

In reality, legalising AD will not change the lives of these women, and to say that it will is to ignore what is needed.

Liveable wages and sick pay, access to training opportunities, and local solutions to the day-to-day issues faced in work are a must. Staff and families watching a loved one experience pain without access to a pain specialist will be drained by supporting someone through this situation, but the situation can be changed. Taking people’s pain seriously and making sure that availability of medication and discussion of options is smooth and consistent will change the situation.

This is just one factor we can improve by looking at what the problem is and ending it. The person’s life is not the problem.

Women and other marginalised groups, including disabled people

In places where AD is already legal, many factors interplay into what kind of treatment and services, and wider social experience, a person has access to, and what decision they will make.

A consistent factor in opting for AD is isolation. The presence of a high quality support network which does not melt away when needed is vital. (Maytal & Stern, 2006).

Unfortunately, consistent support is not automatically on tap, and women and other marginalised groups are more at risk of isolation.

A 2009 study looking at the rates of divorce for people diagnosed with MS or a brain tumour found that women were more likely to become divorced after diagnosis than men: six times more likely (Glantz et al., 2009).

The evaporation of support from family and friends is not solved by AD legislation. Making sure that the person has access to technology to keep in contact, along with access to practical and psychological support for both the person and their support network, can keep some ties from fraying. Employers can make time available through compassionate leave, or changes to working hours. The wider support network can assist with childcare, picking up essentials, and household maintenance. We can make space for people to be there.

More widely, groups that are already at higher risk of isolation need the barriers to building a reliable support network to be removed. -isms, -phobias, and hate have got to go. Respect, listening, allyship and change need to become “the norm”.

We can choose to say “There’s nothing more we can do”. But that’s a lie, and we deserve better.