Tag Archives: awareness

Disabled people and domestic abuse – we need to do better

Disabled women are twice as likely to experience domestic abuse than non-disabled women, yet support services aren’t always accessible. Disabled people can also face unique challenges in recognising and reporting abuse. It’s an issue that isn’t often spoken about. This needs to change.

With this in mind, domestic abuse charity Safe Lives is doing a ‘spotlight’ throughout October and November, focusing on how professionals can better support disabled people experiencing abuse. They have been posting resources, webinars, blogs and podcasts and they are doing a live Twitter Q&A on Friday 2 December.

We spoke to Carly, an advocate for autism and girls, about why this is so important.

I was diagnosed with Asperger’s at 32 which is a late diagnosis, but autism in girls wasn’t really understood. I have three daughters; two of them are autistic as well, which is how I found out that I was. I was looking up everything I could about autism and girls and thought “I’m autistic too” – I ended up being diagnosed on film!  The consequences of not being diagnosed can be severe, including being in unhealthy relationships.

Recognising and reporting abuse can be harder for disabled people

For us all in society, disabled or not, the very nature of what abuse is can be murky. All too often we see adverts of women with bruises as an image of domestic abuse. Abuse, however, takes many forms. It’s difficult enough to recognise and report abuse for anyone experiencing it, but for disabled people it can be even harder.

The choice for a disabled person to leave their abuser is not an equal choice to those who do not rely on their abuser for their daily care as well. And how can a person with a social and communication condition have the equality of access to leave, when they may not even realise that what they are experiencing is abuse?

A lot of autistic people are vulnerable because of our lack of social imagination which is about understanding “If I do this, what happens next?” – consequences. We’re very often so consumed in our own thoughts that we think other people have the same wants, needs and agendas as we do, which can lead to us being very vulnerable. Another thing is our theory of mind – we imagine that other people have similar thoughts to us. So if you knew you were experiencing abuse, you may not report it because you think that other people already know. Because you know, they must do too. It can lead to an autistic person being very angry and resentful because they think “Why aren’t you helping me?” – it’s because that person doesn’t know. You need to ask us direct questions, basically.

Carly sitting at the UN with a few people in the background
Carly, speaking at the UN about autism and girls

A “one size fits all” approach to domestic abuse doesn’t work

It’s only in recent times that coercive control has become a legal offence. For someone on the autistic spectrum who requires support with their routine, the control of their lifestyle, the control of their access to social events and family and control of their money, this could easily disguise an abusive relationship to an onlooker. Mix this with an autistic person’s fear of dramatic change, delay in emotional processing and the theory of mind differences described above, and you can see how someone may not seek help.

We need our safeguarding explained in a different way and support services need to be more accessible. The stuff that’s out there is really good but some little add ons would help. I’ve had a meeting with the NSPCC about their schools workshops and I’ve created a short online course on safeguarding for people with autism, which is free to do. Hopefully it will help people think differently.

Including disabled people in these important conversations

Safe Lives’ spotlight on this issue is vital. The protection of disabled people from abuse is a multi-layered complex matter that simply is not covered by standard safeguarding projects. The media also all too often leave our unique needs and experiences to one side in the vital adverts  and workshops on abuse – how to recognise it and how to seek help.

I think for many people, disabled adults are either viewed as not having relationships or sex and therefore void from these conversations, or seen as just being able to access the same sexual health and abuse information as everyone else. Of course, in reality, this is not the case. The most vulnerable in society are often the last to be supported. Disabled people aren’t asking for special treatment but we are asking for a fitting reflection of our experiences in society and to be part of the conversation, a seamless inclusion and not an afterthought.

If you have been affected by the content of this blog, you can contact the Samaritans or your local Refuge service for support.

You can find all Safe Lives’ content on their website and take part in the Twitter Q&A on Friday 2 December.

Disabled Survivors Unite is an organisation working to improve access to services for disabled survivors of abuse and sexual violence. Visit their website to find out more.

Not a superhuman? Never feel guilty for not doing ‘enough’

Anna Scutt is an actor, singer and hypnotist. In this blog she writes about the impact that adverts like ‘Meet the Superhumans‘ had on her, and how she’s come to accept that it’s okay to admit you’re not okay.

That ‘Meet the Superhumans’ advert. It, and programmes like ‘Disabled Daredevil’, used to make me feel inadequate for not doing something amazing like a bungee jump or a triathlon.  Until two things happened last weekend to change my mind.

One, I read Kim Daniel Daybell’s blog ‘You don’t have to be an athlete to be superhuman’, and two, I got talking to a man sitting next to me at the theatre.

“How does your CP actually disable you?”

He was very impressed that I had come to London on my own.  In the course of conversation, I told him I had also been to Milan to the opera, and that I’d sung in opera myself at university.  At which point he asked ‘Forgive me, but how does your cerebral palsy actually disable you?’

That made me think. Things that I consider ordinary – I drive, I sing, I’ve got a language degree and can watch all those Scandi-noir dramas without subtitles – non-disabled people consider superhuman because they realise that those things are way more difficult for me than they would be for them. They’re not being patronising, they’re just being non-disabled. He was genuinely interested though, so I answered his question: I am in constant pain. I didn’t tell him I hate it. And it took me a long time to admit it, but it’s OK to hate it.

Anna acting on stage. She sits on a mans knee, turned towards each other, in period costume
Anna playing Gwendolen Fairfax in The Importance of Being Earnest, with Paul Henshall as Jack Worthing

Never feel guilty for not doing ‘enough’

There are so many inspirational stories on the internet that not being OK with my CP made me feel like a failure.  But who doesn’t hate being in pain? That doesn’t make me a failure, it makes me human.

All these inspirational people tell you that you can do anything you put your mind to, but actually, ‘Yes, I can’ might not apply to you.  And that’s OK too.  I mean, it sucks, but it’s nothing to be ashamed of.  I want to dance – tap, jive, quickstep – but my body doesn’t.  I am an actress and I would love to be in a lavish costume drama, but there aren’t many wheelchair users in Jane Austen.  Feel sad about it, feel angry, but never feel guilty.

Anna smiling at the camera in her wheelchair

If you want to play sport, opportunities have improved thanks to the Paralympics.  But if you don’t, nothing much has changed.  Coronation Street did more to raise awareness for me.  I used to get glared at in public if I got out of my wheelchair and walked, as if I was faking my disability. (I blame Little Britain’s Lou and Andy!)  But since Izzy Armstrong stood up out of her wheelchair at the bar of the Rover’s, the glaring has stopped.

Equality is still some way off, but it’s OK not to be a trailblazer or an activist. Someone else will raise awareness; someone will take that inaccessible shop to court, but don’t feel guilty if it’s not you.

You’re only human, after all.

If you want to find out more about Anna’s career, check out her webpage or watch her showreel. 

If you have a story you would like to share, get in touch with Scope’s Stories team.

 

Dyspraxia and social anxiety: why I’m not hiding anymore – End the Awkward

Guest post by Rosie, who has dyspraxia, which affects her movement, balance and sensory processing. For End the Awkward, she talks about feeling different, her journey to acceptance and how she stopped hiding.

I’ve always been aware of how differently I learnt and how tasks which everyone else found really easy took me so much longer. At the age of 4 I was diagnosed with dyspraxia, an invisible difference which is still very misunderstood. Dyspraxia is thought to be caused by a disruption in the way messages from the brain are transmitted to the body. This affects my ability to perform movements in a coordinated way, balance, motor skills and sensory and emotional sensitivity.

Every person with dyspraxia is affected differently. Even though I’ve always been very determined, I was also very shy and self conscious. I hated being centre of attention and any fuss made feel uncomfortable. I really struggled making friends as everyone was very different to me.

People didn’t understand

The lack of understanding which surrounds dyspraxia didn’t help at all, a lot of people didn’t and still don’t know what it is. I was misunderstood, judged and negative assumptions were made about me. I was called clumsy, careless, stupid, lazy and told that I simply wasn’t trying hard enough.

If you had asked me to describe what dyspraxia was and how it affected me I would have avoided the subject completely. I just didn’t know how to talk about it and was scared that people would run a mile if I disclosed to them. Awful bullying and ignorance at work had left me too anxious to speak, struggling with social anxiety and in a dark place.

Feeling different

A common theme for many dyspraxics is feeling different and struggling to make and maintain friendships. Over the years I’ve beat myself up a lot and wondered why I couldn’t be as socially confident as others, which is an ongoing challenge. I struggle with managing my emotions and can be prone to panic attacks and sensory sensitivity, which means the environment around me can be very overwhelming.

I’ve also spent a lot of my life hiding. Hiding from situations or environments which either triggered my anxiety or where I’ve felt uncomfortable. I concealed my  dyspraxia and social anxiety which lead to me experiencing depression. For ages I thought it was just me being me.

Rosie dressed up for an event

Anxiety was taking over my life

Social anxiety made me feel in constant worry that I was going to embarrass or make an idiot out of myself. I worried that I would have a panic attack, experience sensory overload in public or say something that nobody “gets”and have everyone laugh at me.

Then there’s the constant worry that you’ve done something to upset someone and that people hate you and are simply putting up with you. When you’re anxious your whole body can tense up, you can start feeling sick and you can struggle to give eye contact, which is hard enough when you’re dyspraxic. It was easier to avoid doing anything or going anywhere.

After hitting a very low patch I realised I couldn’t  go on like this. Anxiety was slowly taking over my life, stopping me enjoying the things I loved and leaving me fearful, low and constantly on edge, unable to sleep and with zero confidence and self-esteem. The more anxious I became the more clumsier I was and the more mistakes I was making and the more I beat myself up. It was a vicious circle.

Meeting others helped me stop hiding

I got involved in Dyspraxia Foundation where for the first time I felt like I could be myself. Nobody judged me if I made any mistakes. I met others who were dyspraxic and I didn’t feel so alone. I began to learn about how dyspraxia affected me but also the strengths which dyspraxia can bring, which to me are being caring, creative, able to think outside of the box and I’m a very determined soul.

By spending so much time hiding I wasn’t showing the world all of Rosie and I was missing out on so much. With the support that’s out there, I’ve been able to achieve a degree and a masters degree. I’m also learning strategies to help me cope with day to day life and support my mental health.

Ending the Awkward

I’ve been able to help others by writing blogs and raising awareness, helping them feel less isolated and alone. It’s given me more empathy when supporting students in my job as a learning support assistant. I’m determined that nobody should go through or feel what I have. Learning to be kind to myself is something I’m still working on but I’m fighting my fears one little step at a time.

That’s why I’m getting involved in Scope’s End The Awkward campaign. Disability and difference is nothing to be scared of – we’re human beings with feelings. A little bit of patience, time, and kindness can go a long way. Nobody deserves to be made to feel embarrassed or ashamed of being different. After all, wouldn’t the world be such a boring place if we all were the same? You never know what you might find out when you take the time to get to know someone.

You can stay up to date with everything End the Awkward on Twitter and Facebook using #EndTheAwkward or visiting Scope’s End the Awkward webpage.

To read more from Rosie, visit Rosie’s blog.

Instead of venting my anger towards people, I’ve put it into a song – Smiiffy the rapper

Smiiffy is a 21-year-old rapper from Birmingham who is looking to challenge attitudes and raise awareness of mental health and disability.

For 30 Under 30, he spoke with us about how he is using his music to spread awareness of mental health and what he hopes his music will achieve.

It’s really important to be open about impairments as it can help break down barriers and end stigma.

I have Bilateral Perthes’ disease which means my cartilage is degenerating. It’s quite painful now and again but I’ve learnt to live with it. I’ve had around 15 operations and probably a lot more to come in the future.

I also have depression, anxiety, memory loss and probably a long list of everything else!

I’ve been quite open about it, however I haven’t always been confident in talking about it. I always had the fear of being rejected by people if I told them. Lately, I’ve become a lot more comfortable from support online and have opened up a lot more.

Smiiffy, a young disabled man, smiles by a microphone

I find comfort through using humour and writing music. My music is all about my experiences but I sometimes also write songs about experiences of people I’ve met.

Knowing that there are people listening to the lyrics and finding them relatable is brilliant.

You wouldn’t believe I have anxiety when I perform on the stage, everything just kind of goes away. I’m in my element and absolutely love what I do.

An exclusive rap for 30 Under 30

It’s time I show some clarity

I face facts and reality

Every single person is perfect the way that you are

Don’t let any physical or mental issue break who you really are

I’ve had shackles on my wrists and I’ve been scared to speak

I’ve had times where I’ve let tears take over my cheek

But now I’m stronger than that, that’s what you call unity

And when I feel this strong there’s nothing that anything can actually do to me

You can see more from Smiiffy on his YouTube channel and by following him on Twitter.

Smiiffy is sharing his story as part of 30 Under 30. Throughout June, we have been sharing one story a day from disabled people who are doing extraordinary things. Visit our website to see all of the stories in the campaign.

“It doesn’t need to control you” – Dystonia Awareness Week

James Sutliff is a Personal Trainer and Disability Specialist who has a rare neurological disorder known as dystonia. To mark Dystonia Awareness Week, James talks to us about coming to terms with dystonia and how fitness has helped him focus on moving forwards.

It happened in 2008, pretty much overnight. It was bank holiday Monday, I’d gone to bed as normal and woke up feeling unwell. I felt a bit sick, so I went back to bed and when I woke up my speech was slurred. It worried me but I left it for a bit. I didn’t go to hospital straight away.

When I did go to the hospital they admitted me straight away. Initially, they thought I might have had a stroke but that wasn’t the case. I was in hospital for quite a few days before they discharged me. They couldn’t really find anything, a cause or contributing factor. For a few months I was being seen by a specialist. Then my hands started deteriorating.

So they transferred me to specialists in London who were supposed to be the top guys in neurological conditions. So we went and I did lots of tests and they came to the diagnosis that I have a form of dystonia. We did some research, found out a bit about it.

All this took place over two years. It was very frustrating, there were no answers as to why I was suddenly this way and that meant no treatment. I thought it might just go away, and the doctors did, but that hasn’t been the case.

James, a young bodybuilder with dystonia, smiles at the camera

The condition hasn’t got any worse. It’s just not got any better. I think I manage it better now, but at the start I found it very difficult to come to terms with it.

It’s hard to comprehend because physically to look at me, my disability is quite silent. I don’t generally look like a ‘disabled person’. I’m not in a wheelchair; I don’t have a missing limb. So people are often shocked. They think I’m taking the piss.

Using fitness as a focus

I had always kept in shape through rugby. I really found a focus with fitness. That’s what keeps me healthy – mentally and physically strong. I still do find it hard sometimes. But fitness has helped me to come to terms with dystonia. If I look good and I feel good I forget that I have dystonia.

I’m really passionate about fitness and I came across a scheme called Instructability which is aimed at people with disabilities who’d like to work in the fitness industry and help to train and rehabilitate people who also have disabilities.

Because of the situation and what happened to me, I want to help people who have disabilities and help them through fitness. Fitness has helped me to fight against my condition. It makes me feel better, look better and with that, sometimes when I’m training I forget I have a disability.

James, a bodybuilder, lifts weights in a gym

Dystonia and the future

It doesn’t need to control you. You can manage it and it’s just about finding the way to do that. Don’t let it stop you from doing anything. I’m not going to lay there feeling sorry for myself. I’m going to do something.

Dystonia does have an impact on things and it does make life a little bit difficult but I won’t let it beat me. If you let it beat you, it makes it worse.

Visit James’ Facebook page for brilliant training, dieting and day to day living tips. Scope’s online community also has a number of tips around fitness. Visit our community today and get involved.

20 poems for 20 years: my experience as a wheelchair user

When Stephen was 16, he had a sledging accident that left him paralysed from the waist down. That was 20 years ago, so to mark the anniversary, he’s written 20 poems telling his story. They reflect on his experience as a wheelchair user, and how he finds society’s attitudes towards disabled people. 

Having worked on this project for the past couple of years I hadn’t really appreciated how intensely personal the subject matter was. For some people, colleagues, friends and even family, this was the first time I had really outwardly articulated what was in my head.

Being viewed differently by society

The poems covered everything from my accident, to recovering in hospital, getting to know my wheelchair and how I now feel 20 years on. As I started to write and the poems began to come together, I realised I was also writing about how it feels to have a disability and how that changes the way you are viewed by society.Stephen smiling wearing sunglasses as the sun sets

So I was pretty nervous when I came to post my first poem via social media. I used Lego figures to visually represent what I penned in poem form, because let’s be honest you are never too old for Lego!

My reasons for doing this were not so much about the anniversary itself but more about my reflections on spending my adult life as a wheelchair user. Not for a moment do I regret my accident. Life is simply too short. I’m very proud of who I am and what I’ve achieved but life isn’t and hasn’t been without its challenges. Naturally some of these challenges have been down to adapting to a new life with a physical disability but some have also been about my frustrations at being given a label and having to deal with the way disability is viewed in today’s society.

An emotional journey

Whilst all of my poems provoked some sort of emotion internally when I wrote them, it was the ones about discrimination that caused the strongest reaction. One of my poems is called The Acceptable Discrimination, and this is about the fact that in many situations it seems okay that there are barriers that stop disabled people from just being able to lead a normal life.

I live in London and whilst it’s a wonderful, thriving and vibrant city, it can also be incredibly frustrating. Every day things are made difficult or impossible just because it’s not set up to cope with disabled people. The easiest example of this is the sheer number of public buildings, shops and amenities that are no go areas due to steps.

Public transport is also nothing short of a national disgrace. The fact that large parts of the London underground are without lifts and level Stephen, in his wheelchair at the top of a skateboard ramp, with graffiti in the backgroundaccess to the trains is staggering to me. It’s also virtually impossible to travel on any overground train without assistance. We’re told this is because some stations are old or that trains are too high, yet in Scandinavia I’ve travelled on trains independently where every fourth carriage is lowered to the level of the platform. It really isn’t that hard.

Attitudes towards disabled people

I honestly believe that most of this is down to attitudes. We still live in a society where many people don’t think twice about using a disabled toilet, parking in a disabled parking bay or in front of a drop-down curb. Nobody would entertain using a loo for a different gender so why should a disabled toilet be any different? Just as frustratingly there isn’t a day goes by where I’m not asked if I need help, or being randomly congratulated for doing simple things such as living on my own, having a job or going on holiday.

Changing the way people see disability

The reaction to the poems has been brilliant and I’ve been overwhelmed by the comments I’ve had. What has struck me the most has been that some people have said they have challenged the way they think about disability. For me this is the biggest compliment I could receive.

I’d love nothing more than if we just looked at the person rather than seeing their physical appearance, race, age and gender first. We’re all the same really and we all have the potential to be brilliant. 

Here are two of my poems that I hope you will enjoy:

The arranged marriage

The first time we met I didn’t want you.

A lego man lying in a bed, with a wheelchair and a set of drawers next to himI didn’t want to even acknowledge your existence.

I had no choice but to take you and I resented you for that.

You were confident, brash, everything I wasn’t.

But in your own way you needed me.

There were others waiting to take you.

But you and I were brought together.

We had to make it work.

The first time was awkward,

I didn’t know where to put my hands.

Fumbled across the room.

You were patient, you made me take it gently.

And the first time we went out,

It was awful.

I cried hot, childlike tears.

I felt everyone was staring, judging us.

But you didn’t care.

You waited, patiently till I was ready.

And we haven’t looked back.

20 years

Man and chair.

The acceptable discrimination

I am denied entry because of who I am.

Hairdressers, restaurants, theatres and gyms.

A lego figure in a wheelchair, at the bottom of some stairs. At the top of the stairs is a lego waiter offering a glass of wineMany seemingly a step too far.

Unable to travel where I want on public transport.

Those special parts of the city forever out of reach.

That is until someone decides to give me a lift.

Not able to live or work where I choose.

Having to ask for help when all I want is just to blend in.

Made to feel like a second class citizen in a first class world.

This is the discrimination I face every day,

for physically being different.

But I am the same.

I commute, I work, I pay my dues.

I’m tired from the effort, this city, of it just being ok.

Tired of the fact it happens and is somehow tolerated.

Tolerated and ignored by those with the power to make a difference.

But it’s actually their indifference,

that makes it acceptable to turn the other way.

Have you got a similar experience of becoming disabled later in life? Have you found that attitudes towards you have changed?

You can read the rest of Stephen’s poems on Storify or his website, and follow him on Instagram and Twitter.