Meet our Volunteers!

We’re pleased to announce that our little team has grown in recent months and we’re excited to introduce you all to our new volunteers!

SALIHA

Saliha has studied Psychology and Law and is currently completing a masters in Social Work at the University of Kent. She is blind and a survivor of honour-based abuse.

“I decided to become a volunteer for DSU to give a voice for disabled women, and to be an advocate for equal rights. I am particularly passionate about speaking out against the oppression of disabled women and gender-based violence. Furthermore, I would like to empower all disabled individuals, from all walks of life, to achieve their potential.”

JACK

Jack is an autistic activist who works within the charity sector and supports work that helps to empower young and disabled people alike. He lives in Weymouth, Dorset.

“I am delighted to be joining DSU at this time where it is continuing to grow in profile and activism, with a whole network of supportive volunteers to help ensure disabled people’s voices are heard and given hope at times of deep adversity.”

KESHIA JADE

Keshia Jade is an autistic adult currently studying for her BA in Theology with Philosophy at the University of London. She blogs on issues surround mental health, faith, and education.

“Volunteering with the DSU offers me the chance to use my voice, and experiences, to advocate for those who have been forced to suffer in silence. I feel blessed to be a part of an organisation that is focused ensuring that disabled people are heard.”

ZAHRA

Zahra is a Journalism student at the University of Leeds. She has a particular interest in media representations of disabled people and domestic violence issues.

“I’m very excited to start volunteering with DSU. It’s great to be getting involved with the only organisation I know of to focus on helping disabled survivors of domestic abuse.”

JAMIE

Jamie has an MA in Social Policy and Ba hons in Politics and Social Policy. He is currently a visiting lecturer at the University of Wolverhampton.

“Working with DSU is really meaningful for me, I want to campaign with and for survivors to improve access to support and educate people.”

BENJAMIN

Benjamin is a Philosophy graduate living in Leeds. He has an interest in disability issues and mental health.

“I’m particularly interested in issues surrounding mental health and the various accessibility barriers associated with them. I’m excited to volunteer with DSU to help tackle these issues.”

JEMMA

Jemma works in education and is a keen volunteer. She aspires to be a community arts practitioner.

“Much of my volunteering to date has been geared towards creating opportunities and supporting change on a local level. Through working with DSU I have the chance to work on projects that are both potentially larger in scale and longer term. More than this, volunteering for DSU will enable me to make an active contribution to a cause which is important to me.”

RACHEL

Rachel is a Social Policy student, Care Worker, and Volunteer in Canterbury, Kent. She is interested in social welfare policies, the care sector, and activism related to sexuality and queer issues.

“I am excited to be working with Disabled Survivors Unite to raise awareness and advocate for better support for survivors of abuse, particularly with an organisation founded by those with personal experience of the issue.”

NATASHA

Natasha has an MEd in Educational Psychology. She is currently an NHS clinical reviewer and autism specialist support worker.

“I am thrilled to be part of Disabled Survivors Unite to help support other disabled survivors and make sure their voices are heard and represented.”

Mental Health Services and Autism

Today is World Mental Health Day. We asked disabled survivors to share their stories about mental health services to raise awareness of the barriers which we face and to highlight the need for more funding to ensure services are inclusive and accessible.

This post was submitted anonymously.

Content note: this blog discusses disbelieved by health professionals. The author also briefly mentions of self-harm.

NHS Mental Health. A much needed, underfunded machine that cannot afford to see the individual and so breaks the sensitive soul with well meaning callousness.

“Six weeks therapy and you should be cured.”

“Take this pill it will make you feel better.”

I was eleven when I entered the system.

In the previous year my family had moved homes, I had changed schools and my parents were getting a divorce.

I had been told that children couldn’t get clinical depression. I was told that I was acting out. I was seeing someone at CHAMs, I don’t remember who. Their whole person ceases to exist in any meaningful sense in my mind.

They thought it was because of my sister, she was so sick, everyone assumed that I was acting out because of a lack of attention. They never listened when I told them that she was the least of my troubles. My saving grace, the reason I took less than the overdose limit. The reason I knew the limit.

You’d think they’d understand that all that change hurt my head. That the world no longer felt real to me. That it never really had. That I hated walking on patterned floors because they melted down. That walking passed tall buildings frightened me because they bowed to the ground. That faces hid in every pattern. That hugs hurt, and lights burned my eyes.

They didn’t ask, so I didn’t tell.

They put me on medication. I told them it didn’t work. They said I must not have been taking it. But I had. Even when it made me sick. When my skin would burn and the time my pupils blew and wouldn’t contracts. I always took them.

But to them I was a liar. A waster and a scoundrel.

I’ve never been in trouble in my life. I don’t have a criminal record and yet I always felt condemned in their eyes. Like I wasn’t trying hard enough. I didn’t want to get better.

50 minutes, every week for months. Then years. Their faces blur. I barely remember names.

There was one Dr who told me that I reminded him of a client he once had. That she struggled too but then her mum had died and her life got better. My mum was in the room.

I had one who liked to sit close.

By now they have all become a faceless entity. A pill dispensery.

Moths of time butting into each other in my mind but never settling.

I’m older now. No longer guilty. Long passed angry.

Why didn’t they help me? Couldn’t they see me?

I think of the lost years. I think of the lingering fears.

I think of the shed tears.

I think of the years I hurt myself just to feel.

Then one person, when I was in my late twenties after years of appointments said to me, “what do you know about autism?”

If you have been affected by this post and would like to speak to someone, please click here for a list of helplines.

Farewell Holly!

Our friend, colleague, and fellow Co-Founder Holly Scott-Gardner is leaving our organisation as she goes to study in Colombia.

Holly was one of the founders of Disabled Survivors Unite and she has had a leading role in creating and building our organisation. Mostly notably her work has focussed on promoting sex education for young disabled people and disability access to services. She also created and ran our wonderful website and blog.

We’d like to take this opportunity to thank Holly for all the passion and hard work she’s brought over the last year, our organisation really wouldn’t have been what it is today without her. We will always remember and be inspired by her determination and unwavering perseverance.

Holly has been a friend to us all as much as she has been a colleague, and while we’ll continue to be friends from afar, we’ll miss her very much. But we’re glad for the time we’ve been able to spend together—we have so many fond memories, special moments, and happy times filled with fun and laughter that we’ll always treasure.

It’s been an honour to work with Holly, we wish her all the best for her future and look forward to hearing about her adventures in South America!

Photo of Alice, Holly, Bekki, and Ashley in Brussels. All smiling. Photo in black and white.

We are looking for volunteers!

We are looking for an ambitious and enthusiastic people to volunteer with Disabled Survivors Unite!

The vast majority of work will be done remotely from home, but there may be opportunities for you to attend events and meetings if you are able to.

Successful applicants will have the opportunity to discuss and chose what their role will be in within the organisation. You may want to work in campaigns, research, administration, events, fundraising, blogging, training, or another area.

Positions are open to anyone living in the UK, and we especially welcome applications from people who are disabled, BME, and LGBTQ+.

Job description

You will be passionate about creating change for disabled survivors of abuse and sexual violence.

You will have the ability to handle sensitive and confidential information.

You will be able to discuss abuse and sexual violence.

We are flexible on how much time volunteers can commit, but it would be preferable for you to give a certain amount of hours per month.

We will ensure applicants and volunteers have their access and communication needs met.

Please note that this is an unpaid role as we are currently unfunded, this means every position within our organisation is voluntary.

For more information or to request an application form please email: info@disabledsurvivorsunite.org.uk

Closing date: 15 July 2017

A Refuge for All

Shaping Our Lives has secured funding for a project to make refuges more accessible to disabled survivors.

The project is called A Refuge for All, and they are looking for disabled women who have experienced violence or abuse to help take part.

Interested in getting involved?

There will be two focus groups held next month;

London on 14 June from 1pm – 4.15pm.

Birmingham on 22 June from 1pm – 4.15pm.

Travel expenses and some support costs will be covered, and there will be a payment of £50 offered for your time. Lunch will be provided too.

An Advisory Group will also be set up, they will meet eight times over the next two years starting from this July.

If you’d like to find out more information, register an interest in attending a focus group, or inquire about joining the Advisory Group, please contact Becki Meakin.

Email: becki@shapingourlives.org.uk

Phone: 07956 424511

What is the project?

The aim of A Refuge for All is to establish practices which will meet the needs of disabled survivors and pilot these through existing services.

The project has been inspired by the Women’s Aid report Making the Links: Disabled Women and Domestic Violence which highlighted the lack of accessible services in the UK.

The project will be co-produced by disabled women and people who work in services. It will start by evaluating this research in the current context.

It aims to develop a user-led service model, raise awareness of the abuse disabled women experience, and look at how barriers to services can be broken down.

It will establish two pilot sites where services will be made fully accessible, and these will be used as an example of good practice and show how services can reach out to the disability community.

The project will also bring together services, other agencies, and disabled people’s organisations to improve partnership working and understanding.

Who are Shaping Our Lives?

Shaping Our Lives is a non-profit user-led organisation. It hosts a national network of user-led groups, service users, and disabled people.

The organisation is committed to inclusivity and diversity. They ensure that diverse and excluded communities are represented in the policy making, planning, and delivery of services.

You can visit their website by clicking here.

Autism and Abuse: How Autistic Acceptance Helped Me Move Forward

For World Autism Awareness Week, we are amplifying the voices of autistic survivors on our blog.

This post was submitted by Jessica Benton.

Content note: abuse (including, but not limited to, bullying and sexual harassment), assault, brief mention of suicidal thoughts, gender binary

**I grew up not really understanding why I was the way I was, and I was treated pretty terribly throughout school. It left me wondering what was wrong with me and why I couldn’t be like everyone else.  In infant school I had a lot of trouble connecting to other children and interacting with them, and in junior school I tried to make friends but I didn’t have the same social skills that other kids did – I would talk a lot about special interests and if I was happy or excited I’d rock back and forth and flap my hands. I would get strange looks and the other kids would avoid me. **

** Secondary school was when it all came to a head. There was a group of girls who would verbally bully me and spread rumours about me, and boys who would sexually harass me by doing things like grabbing my chest. When I was 14 depression and anxiety took hold and the bullying was at its peak. 

**One day I completely broke down and I was sent home from school. That day had involved more of the same bullying but it just pushed me over the edge – the girls were talking about how they had taken a mug shot of me and posted it to Facebook, something which I never found out was true or not. The boys were pulling my hair and trying to push me over or touch my chest.

My parents contacted  the school straight away. A school assembly was held for the boys in the year and although I wasn’t mentioned by name they were told about how serious sexual harassment was, and the girls were dealt with separately. I lived in fear of what would happen after school. I didn’t see myself having any friends or relationships, I couldn’t trust anyone to not treat me the same way. I had grim thoughts and didn’t think I would live past 18, but the combined efforts of my true friends and family helped me to turn things around.

When I was 15 I came across an online autistic community of activists – they were ordinary people on the spectrum who championed autism acceptance. They spoke about neurodiversity, which accepted autism as a natural difference in human brains, with autistic people needing to be accepted and accommodated by society instead of being looked down on or viewed as an abstract mystery to be solved by the next medical breakthrough. 

**The ideas of acceptance, autistic pride and diversity, without exaggeration, saved my life and made me a happier person. Autism activists speaking out and campaigning helped raise my self-esteem, and now I want to do the same for other people. I am now 19 and therefore lived past the age I once thought I wouldn’t. I have realised that the bullying and harassment I experienced was not my fault and that I didn’t deserve it. Society had lead me to believe that I, as the ‘freaky and ugly’ one deserve to be treated in an inhumane way, because sections of society maintain the mistaken notion that autistic people are less than human and are inferior. **

**Disabled women are more likley than others to be sexually harassed, assaulted or bullied whether the perpetrators know explicitly that we are disabled or not. We are told by society and media that we should be thankful we are receiving any attention or notion of our being desirable to others, so we should tolerate such treatment. Because there is still an underlying notion that our lives are lesser.  For anyone reading this, I tell you now that you don’t deserve to be treated like that. Disabled women have the same rights to control over our own bodies, emotions and lives as our non-disabled counterparts. Disabled women (and men!)  have rights to be heard and taken seriously, to be included in feminism and human rights activism. We have the right to love freely and be loved. This message goes double for disabled people who are LGBT+! **

I made a film with Fixers, the charity which gives young people a voice, telling my story and explaining how neurodiversity and autism acceptance have helped me to move forward. You can watch it here:  https://www.youtube.com/watch?v=myUM7YNEg-s 

Thank you for you time!

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.

Making Headlines

For World Autism Awareness Week, we are amplifying the voices of autistic survivors on our blog. This post has been submitted by Alanna Rose Whitney.

Content note: abuse (including, but not limited to, gaslighting) and disordered eating

It’s hard for me to talk about the abusive situations I faced as a child, both because I know so many other people who have been subjected to so much worse than I have that I feel guilty for taking attention away from their stories, and also because it re-opens old wounds that will never fully heal due to persistent gaslighting and denial of my perception of those events by perpetrators and witnesses alike.

I did just that though, almost two years ago now. I talked about an incident that still makes me gasp and recoil in the retelling nearly two decades after it happened. And doesn’t it figure that I was met with more erasure and compounded abuse as a result?

In the summer of 2015 I spoke with a journalist from the Washington Post who had been flown out to interview me for an upcoming piece on Autistic acceptance. I was followed around and photographed and throughout the day answered questions about neurodiversity and aspects of the activism I was involved with. And I thought I was being listened to. I thought that this article could help to highlight the difference between fearmongering “awareness” and the counter-movement to promote acceptance and love. But I was wrong.

Besides the complete exclusion of at least one other more prominent activist with far more experience and insight than myself, the final product was all incoherent fluff intercut with giving a platform to parents who hope to erase autistics from existence. It was not well-recieved by the Autistic community.

However that wasn’t the part that hurt the most. Neither was the way they portrayed me as “quirky” or the stream of online comments about how I wasn’t really autistic enough or completely off-topic, how I could be pretty if I lost some weight. What really hurt was the opening line, which made light of a seriously traumatic experience that I had never opened up about before, which failed to even address the commonality of the issue – let alone confront the gravity of it’s impact.

The third line of the article reads: “Anchovies on pizza could send her cowering under a table.” That reference is never elaborated upon and I’m actually crying re-typing it. The whole first paragraph reeks of condescension, but the dismissive and derisive tone of that one sentence really stings.

Here’s why…The story is all-too-familar to most autistic people; we frequently experience physical violence (usually accompanied by verbal/emotional abuse) due to what is often referred to as “picky eating.”

When I was seven, my father took me to visit some family friends who had rented a trailer up in cottage country somewhere in rural Ontario, Canada. In fact, their daughter, who was my age and non-autistic, just recently passed away from a drug over-dose, found in a bus station all alone – but that’s another sad story entirely… This story begins with a group of happy “campers” gathered around a picnic table, laughing and drinking and deciding it would be easier to order pizza and direct the delivery slightly off the beaten path than it would be to fire up the barbecue and cook something. The toppings were picked and when asked, I reminded my dad that I could not eat anchovies, that I had never been able to handle the taste, texture or smell of any fish or seafood (nevermind my aversion to all meat and eggs, which I usually choked down anyway for fear of repercussions). I was told, in an angry tone, that I could just pick them off the pizza when it came. I responded to explain that I would still taste and smell the oily residue and that I would not be able to make myself swallow even that. I was scoffed at, laughed at and called a brat – so I meekly excused myself and said it would be okay to go to bed without dinner, that I would just retreat to the trailer to read.

But I had barely opened the first page of my book when my father burst in, fuming with rage and growling about how I had made him look bad. In the midst of this he had grabbed a large metal spoon from the kitchen and the moment I tried to speak he whacked me sharply in the kneecap with it. Of course then I started crying from the pain, which only made him angrier, but he set the spoon down and said he was sorry. He tried to convince me to come back out and eat the pizza, tried to explain that he had overreacted because he was hungry and tired and buzzed from a few beers. But I was scared and hurt so I started edging away, scooting backwards until I was pressed into the far corner under the table. And when I refused to come out from under there, seeing through his feigned gentle coaxing, he got mad again. He reached forward and pulled me out by the shoulders and then grasped me by the throat and lifted me about two feet off the ground. He didn’t quite shake me, but squeezed my neck for more than a minute before he set me back down and after realizing the line he had crossed I was left on my own to cry myself to sleep without being forced to go back outside to eat. It didn’t end there though, because upon arriving home I told my mother and begged her not to make me visit him again – but she refused to believe me because my dad had “beat me to the punch” by telling her I had exaggerated “like always.”

It was not the first or the last time that I got attacked for being unable to conform to expectations of my eating habits and it was not the first or the last time that I had sought refuge by hiding under a table.

Even that sentence of the aforementioned article was not the first or the last time that I have had my words ignored, or twisted. Being familiar with the term “gaslighting” hasn’t stopped me from being subjected to it. Being articulate and labelled “high-functioning” hasn’t stopped me from having my voice stolen or spoken over. Being aware of how wrong it was for adults in my life to have violated my bodily autonomy and sense of self in a great variety of ways hasn’t lessened my struggle with disordered eating (orthorexia, bulimia, etc) or made it easier to trust or to be touched.

This story doesn’t have a happy ending, but the closest thing to it is the #ActuallyAutistic community full of other highly sensitive people who have been treated the same way and who are all working together to change the conversation about us – about autism – to include us and to prevent the same kind of destructive, abusive behaviour from damaging the next generation of autistic kids.

Every April, we go #REDinstead to promote #lovenotfear and if you’re reading this, I hope you will consider joining us <3

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.

Autism and Abuse: Embracing Neurodiversity Helped Me Heal

For World Autism Awareness Week we are amplifying the voices of autistic survivors on our blog.

This post has been submitted by Skye.

Content notice: Abuse

I grew up being an undiagnosed ADHD autistic. Many people use this fact to conclude that I must be “not severely autistic”, which to me is a really strange conclusion. As a child, I was often overwhelmed and helpless. I forgot most basic things, I was disorganized, I was lost in social situations, and sensory overload as well as all kinds of emotional distress put me into meltdowns quickly. I was unable to handle my meltdowns in any way.

However, my parent did not see this as a reason to help me, or to reach out for external help or a diagnosis. (Considering how abusive the psychiatric system is, I don’t think this would have improved my life much, but still.) Instead, they used it as a welcome excuse to abuse me.

Throughout my life, many people insisted that I was “normal”, or “extremely smart” or “talented”, refusing to see how disabled I was. At the same time, the exact same people used my disabilities either as an excuse to abuse me, or as a way to manipulate and exploit me in various ways.

They would put me into meltdowns on purpose, but if I had a meltdown, this was interpreted as a malicious act.

They would give me tasks that I could not carry out and then punish me for failing.

They would shame me for being disorganized and demand me to change, which is not in the realm of possibilities.

I was always easy to lie to, easy to convince and easy to manipulate. I’m a gullible person. I’ve had an abusive relationships in which my partner used those traits to make me stay with him for years.

But, I’ve always been a pigheaded fighter too. It took me a while to learn enough about the world before I could escape the abuse, but eventually I did.

Since then, I have recognized that I am neurodivergent and have learned to embrace my neurotype. For me, this was the most important step towards healing and living a really fulfilling life.

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.

Autism and Abuse: The Result of Being Told You’re a Burden

For World Autism Awareness Week we are amplifying the voices of autistic survivors on our blog.

This post is by one of the co-founders of Disabled Survivors Unite, Ashley Stephen.

Content notice: Abuse, mention of suicide

When I was nine years old, my psychologist told people to tie me up and break things I liked until I “calmed down.”

I hadn’t been diagnosed with autism yet, but I doubt the reaction would have been much different if the psychologist had recognised what was happening as an autistic meltdown. It didn’t matter the reason – to her, I was simply too much. Shortly after I was tied up, I tried to kill myself for the first time. Between the ages of nine and twelve, I tried at least a dozen times.

You see, every form of abuse I’ve been subjected to has always been followed up with the reasoning that these things only happened due to my being “too much.” By the time I was diagnosed at seventeen, I had been abused so endlessly that I genuinely thought this was how people were supposed to interact with me. I didn’t understand I could ask for things, like help or kindness or for my basic needs to be met. I had known for years that things were better if I didn’t speak, so I had mostly stopped. I didn’t understand why I existed, only that my family were very upset when I tried not to.

These are things I still carry with me daily, all due to abuse, and I know far too many autistic people in similar holding patterns. It’s wrong that our autistic traits are coded as being “too much” and we are made to feel like burdens; that no one tells us what to watch out for until it’s too late. Society seems to single out autistic traits as excuses for abusive behaviour. It is vital that this ends.

To fellow autistic people, I wanted to say you aren’t alone and you deserve to be treated kindly, and with respect. Abuse is not a normal part of life and there isn’t an excuse for it. No matter what people tell you, it’s not your fault. You never have been a burden, nor could you ever be.

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.

Samaritans – If you need to talk to someone immediately, please visit www.samaritans.org or call 08457 90 90 90 (24 hours, 7 days a week)

Autism and Consent: It’s Time for a Rethink

For World Autism Awareness Week we are amplifying the voices of autistic survivors on our blog.

Georgia Harper is a Youth Patron for Ambitious about Autism, and has previously written for the Ambitious about Autism myVoice website. Georgia is currently studying for an LLM in human rights law at Queen Mary, University of London. In this guest blog she writes about autism and consent.

Content note: discussion of sexual assault and abuse.

It’s World Autism Awareness Week, so I’m going to start by making you aware that some autistic people have relationships, and some autistic people have sex, and some autistic people are taken advantage of in those contexts amongst a variety of others. Given that autistic people are people, this really shouldn’t be so surprising, but these simple facts are often overlooked in the way we talk about autism and consent – or rather, in the way we DON’T talk about it. In fact, some people still use outdated stereotypes around autism to attempt to excuse abuse and harassment, along the lines of “he works in computing, so he might be on the spectrum, so he can’t really know what he’s doing”.

Of course, autistic people can be perpetrators just like everybody else (and the assumption that none of us understand whether there is or isn’t a “yes” is frankly offensive…), but these attempts to pit survivors and autistic people against each other ignores the significant number of people in both categories.

There are various reasons why autistic people are particularly vulnerable to various forms of abuse; for example, many cannot pick up the subtle signs of a person’s true motives, instead taking what they say at face value. Having said that, I think it’s really important to think about how much of this vulnerability is taught.

Our sensory experiences are often framed as “objectively” wrong and something for us to learn to hide or “get over” – so if you happen to be hypersensitive to touch, you might assume that any discomfort around touch is 1.) because of your autism and 2.) your own problem to deal with. I’ll let you do the maths.

Growing up autistic also tends to be a crash course in The Social Rules, often launched at us with no explanation beyond “because the adult says so” or “because otherwise people won’t like you”. This can be dangerous not only because those with more malicious intent may use very similar reasoning, but also because this rush to drill in social skills invariably (and conveniently) leaves out one of the most important social skills of all: learning to say “no”. And as for relationships – well, if it’s apparently so rare, we might be left feeling like we should be grateful if we have one at all, however unhealthy it really is.

These issues are further compounded by wider stereotypes around abuse. For example, in the UK, sexual assault is legally defined as any sexual touching without consent or reasonable belief in consent, but as a society we often have very narrow ideas about what sexual assault can look like – these ideas often involve a random attacker in an alleyway, even though most attackers are known and often trusted by the people they target.

Myths like these harm all survivors, but may present a particular barrier to autistic people coming forward as they are more likely to take the “assault is always a stranger in an alleyway” suggestions literally.

Those who do come forward then face the usual barrage of people trying to discredit them. For instance, “you don’t SEEM upset” might be said to someone who doesn’t express emotions in neurotypical ways – also ignoring the very wide range of responses that even neurotypical people show in the face of trauma. “You didn’t say no” is another common one – forgetting that your body is your own by default, and interference with that needs your express permission. This is particularly harmful to those autistic people who freeze or become non-verbal under stress – it shouldn’t have to be said, but shutdown is not consent.

These are just some of the reasons why autistic people may be both more vulnerable to abuse and less likely to receive the support they need in the event of abuse. Ignoring the problem won’t make it go away – but perhaps changing attitudes towards autism and towards abuse will.

If you have been affected by this post, or would like help to find accessible services in your area, please visit our support page by clicking here.