Chris has dwarfism and experiences regular harassment. For Hate Crime Awareness Week, read his blog about the effect this had on him and why he’s keen to change attitudes.
A lot of people still think it’s socially acceptable to mock and effectively dehumanise people with dwarfism. For me, the physical side doesn’t get me down, it’s the attitudes that other people have towards it. There’s still a big stigma around dwarfism and the way we’re portrayed as freaks.
Experiencing harassment at work
I worked at a local pub for a few years. At first, I mostly did night shifts and of course people are drinking, and I was specifically targeted. I’ve had people run up behind me and try to pick me up, people patting me on the head, talking to me randomly about really personal and inappropriate things. People even take photos or film me, purely just to portray me as being different.
It got to a point where I had a breakdown and told my family and my managers at work about it. They were very understanding and agreed that I should do more day shifts instead. It’s a lot better. It’s nice to be able to just get on with your job without constantly feeling paranoid.
The effect of endless harassment
Endless harassment can create paranoia. You just constantly feel paranoid if there’s someone behind you or if someone’s got their phone out, are they going to take a photo of me? And it’s the principle behind it – that they’re going to share it on social media as a joke.
Because I’ve been experiencing it for a long time it can be difficult when I’m in certain environments not to be too self-conscious. For some people, it can lead to depression and even suicide.
Comments and insults can be more damaging than physical assault, certainly for me – it’s just that concept of feeling excluded from society. It also affects my confidence when it comes to working and dating.
Through animation, I re-created some of the worst things that I’ve personally experienced. I hope it will raise awareness and change perceptions. I want to put this kind of harassment on the same grounds of nonacceptance that racism is.
I also want to challenge the dehumanising ideas about what disabled people shouldn’t and shouldn’t do. I think education is key to changing attitudes. One day I hope I can walk down the street and nobody cares about my height.
The Headmistress at the school had refused to take me, and my Grandmother was formidable, absolutely formidable, where I was concerned: and through that visit I got to go to school, with the rest of the family; and my brother, can you imagine this – I thought nothing of it until I got older. I was five; my brother was about nine. He used to carry me on his back to school in the morning. Came for me during playtime, that means he carried me around because I couldn’t walk; carried me home at lunchtime, carried me back after school after lunch, and carried me back after school in the afternoon. That’s a bit much, you know, for a nine-year-old, to carry a five-year-old, and he did that every day and never complained.
I wanted to be a librarian
I wanted to be a librarian, and the careers officer Mr Jolly said, “No way, no way, could you ever do anything like that,” and what came back was a voice from the side, and that was the headmaster, who said, “Now then, how can you say that, because you don’t know our Alan: he can do whatever he wants.”
Working in a subnormality hospital
In the end, I got into trouble one day, big trouble, and I was absolutely furious because of my own experience. I couldn’t stop thinking that had the education authorities have had their way, when they said I was mentally defective, I could have ended up as a patient in that hospital; and that was a rather daunting thought: and they had a block, a ward, called ‘H Block’, and, you know, they had ABCD wards. H was a ward for low-grade patients; that meant their intelligence was very low, and they also had behaviour problems. Many of them had to be restrained for a time; every student had to do at least one month on H Block, and my first day there I just lost it. I went into orbit, oh, terrible. We had to feed the patients, and the staff on the ward got a main course and a dessert and mixed them both together, and fed it to the patients. I couldn’t do that. I kept thinking, ‘This could be me’, you know, ‘this could be me’. There’s no way I’d want my food like that: so I refused to do it…
In 1969, Alan became a teacher at Meldreth Manor School. He continues to have a keen interest in education, through visits to schools and through his writing and training.
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.
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.
A guest blog from Lucy Driver, a visually impaired student that decided to stay in mainstream education. She knows the benefits and disadvantages of access to education outside of specialist education for visually impaired students.
When my vision began to deteriorate, I found it difficult to access the relevant information about my sight loss and what impact it might have on my education.
I’m hoping that this blog about my experiences might aid those who find themselves in my situation, or are currently supporting someone facing a similar circumstance. I aim to do this by explaining what I did to enable me to stay within mainstream education.
Registering with the Local VI Authority
Registering with the local authority’s visual impairment (VI) education advisory service provides better access to the curriculum for students with a visual impairment. The process itself was relatively straightforward.
The Special Educational Needs Coordinator (SENco) at my school initiated my application. After the administrative side of things was complete, a specialist advisory teacher with the visual impairment team met with me at school for an informal assessment to establish my access needs.
I have since continued to meet with the same VI advisory teacher once or so a term. It can be of great benefit to be able to talk to an individual regarding what is and isn’t being done to support you as a student. It also provides you with some perspective, as you are able to discuss any concerns you may have with someone who has a bit more experience in bridging the gap between special educational needs and education itself.
A good exams officer is a blessing!
Visual impairment and academic achievement are not directly related to one another; sight loss does not have to mean worsening academic performance.
Exam modifications are put in place to ensure students that require additional support are at the same starting point as students who do not. These can come in a variety of formats from enlarged font size to additional time allocation.
Prior to the submission of the application, everyone involved (the student, their parent’s, the school’s SENco etc.) will meet to discuss what modifications (if any) would be of benefit to the student. Once these arrangements have been agreed upon, the school’s examination’s officer will apply for the modifications to be made
The uses of modern technology to secure better access to the curriculum are endless. I use the following to enable me to work independently at school:
iPad – This allows me to read text books as ebooks, enlarge imagery and have PowerPoints emailed to me by class-teachers to eliminate the issue of whiteboard glare.
iZoom Software – This is a USB containing magnifying software that enlarges the screen format on computers. It can also re-colour the screen if needed.
Electronic Video Magnifier – I use this during my exams in order to further enlarge my exam paper manually. This means that I don’t need a reader, which enables me to work independently and at my own pace.
Coming to terms with sight loss
A diagnosis of sight loss is incredibly daunting on its own. Adding that to being a teenager trying to keep up with your peers whilst being conscious of the sight you have lost makes it a very difficult concept to explain to anyone that hasn’t experienced it themselves.
I do feel that it’s incredibly important to change attitudes towards people with sight loss, especially when everyone you’ve ever met starts a conversation with, “How many fingers am I holding up?”
Having these conversations sooner rather than later, enables the wheels to be set in motion. This provides peace of mind to both the student themselves and their family. It establishes the knowledge that not everything is changing and that going to school and obtaining the same qualifications whilst aiming for the same future as you would have previously, is not an impossible concept.
Can you imagine the impact technology can have on a disabled student’s life? Technology can give disabled people independence that they could only otherwise dream of.
With your support, technology is opening up the world for young disabled people like Alisha. Alisha is 17 years old and attends Scope’s Craig y Parc School. In this blog she tells us how technology is helping her to realise her potential.
If I’d been asked to write this blog two years ago, it would have taken about an hour and a half just to write a sentence.
I would probably still have done it because I want everyone to know the difference technology has made to my life. But it would have been so frustrating and so difficult.
“I can’t physically type as fast as I think”
I have cerebral palsy and I can’t physically type as fast as I think or anywhere near. But right now, that’s what I’m doing. I bet you’re wondering how!
I am using a piece of technology called Dragon Dictate. I speak, and the words appear on my screen and then I can print them out. It’s made a huge difference to me. It’s made me achieve things I only dreamed of.
I used to have a teacher – she’s passed away now – and one day she said to me. “You’re going to do your Maths GCSE.” I said, “No I’m not. Don’t be silly.” I didn’t think I could do anything like that. Studying was so difficult because I had to rely on someone to type everything into a computer for me.
But that’s changed now. I can do it myself with my voice.
“It has opened up the world to me”
Kim, who is the Assistive Technologist at my school, introduced me to Dragon Dictate and it has opened up the world to me.
Kim showed me how to train it to understand my voice – it took a few hours. Now I use it in class and at home as well. It’s made me more independent and able to study on my own. So now I’m doing my Maths GCSE. I know my teacher would be so proud of me.
I never thought I’d be able to do one GCSE in my life, but I’m going to do two. And I feel like I want to push myself even further. Kim says technology can help me do that – it is opening up the world for young disabled people like me.
There are many different types of technology that can help a young disabled person become more independent. For example, if someone has very limited movement they can control a computer screen with Eye Gaze. That means – when they’re reading – they can move from page to page using the pupils of their eyes. They don’t need to press a button or anything.
Just one person – Kim – works with all 42 students here at my school and helps us use technology in different ways. She’s amazing. I don’t know what we’d do without her – we’d lose out on so many opportunities.
I’m guessing technology makes your life easier. Maybe it means you can keep in touch with your family – you can talk to and even see relatives who live far away. Well, Kim’s shown me that technology can do even more for young disabled people like me. It can help us make friends, communicate and control our environment (like turning the lights on and off). It can help us study, get qualifications and give us more opportunities to work. It can make us more confident and independent.
Alisha’s story shows that young disabled people’s lives can be changed for the better with technology.
Anthony talks about how Scope supported him toward his ambition of working to support disabled people. He shares his story as part of our 100 days, 100 stories campaign.
When I was five years old I met a young boy at school who was severely disabled. He didn’t walk, talk and couldn’t sit up. It made me feel sad that he couldn’t get involved and play with all the other children. He used to lie on the floor and I wanted to lie down beside him. I went home one day crying because I worried about him. My mum asked what was wrong. I told her I was sad about my school friend. Ever since the first day I met my school friend I have wanted to help severely disabled people.
At my secondary school, there was a boy with a profound speech impairment. Teachers used to call me to help interpret. The teachers all said how good I was at helping others. When I got a little older I met my best mate who also had a speech impairment. I’ve known him now for nearly forty years and I have been his voice many times.
My passion is to help severely disabled people. This is why advocacy is very important to me. Too many times, I’ve seen people without a voice left in a corner and forgotten about. It is people like this that need advocates. This is why I am doing my advocacy course, to help give other people the chance they deserve.
What has been the greatest hurdle you had to overcome?
The greatest hurdle is to tell people what I really want; to get people to believe me. They say to me how can you do it when you need so much support? You are disabled yourself, how can you help other people? But I can help people exactly because I am disabled and I know what it feels like. I feel their frustrations and understand their difficulties.
The breakthrough came when I came to Scope. Scope saw my talents in helping people. Then I met my fiancée at Scope and another lady at my service who needed support. This made me more determined to help people.
I was at home one day when an assessor for one of the staff members came in and I had an idea. I asked her if I could do a course in advocacy. She searched for me and said I could do a unit on Advocacy or an NVQ2 in Health and Social Care and choose units in Advocacy.
The assessor was almost sure that the college would provide funding. Unfortunately she came back and said the college would only provide funding for someone who is employed for at least 30 hours a week and will continue to work after the training. Sadly my volunteering did not count.
So my key worker and team coordinator began to look for funding. One of the people they contacted was my care manager at Richmond Council. We had a couple of meetings with my care manager from Richmond Council. They presented my case several times and all the evidence they had gathered about my volunteering and the work I have done to improve outcomes for disabled people.
Richmond Council eventually agreed to pay for the training. It means I am on my way to achieving my lifetime goal; to help give disabled people the voice they never had.
I want to say a big thank you to my mum, my family for believing in me, to my local authority and Scope for giving me this opportunity, supporting me and believing that I can do it.
Guest post from Mima from London, who took part in our First Impressions, First Experiences employment programme and is now aiming for university. Mima uses an electric wheelchair, and types on an iPad to communicate.
When Mima was in secondary school she spent some time at a special school. The lessons at the school were not at the right level for her, and she’s since developed a strong belief that disabled and non-disabled students should learn together whenever possible. Here, she shares her story as part of our 100 days, 100 stories campaign.
I’m hoping to go to university to study sociology and religious studies. I loved sociology when I did it at A-level – you can really look into society and see how it works. I’m especially interested in disabled people’s rights and education.
I have a very strong belief in inclusive education. I went to a mainstream primary school, but then I went to a special school between the ages of 11 and 14.
It wasn’t right for me at all. I wanted to learn and do my exams, and we were singing ‘Ten Green Bottles!’ I wasn’t learning anything.
When I was 14, I moved to a mainstream school. It was much better – I could do my exams as normal, and I was much happier. I loved it even then, but now I appreciate it even more. My year group was a family unit to me – some of my best friends are from school.
I worked with the same personal assistant at school for seven years, and I did A-levels in psychology and sociology.
I tried university from January to July, but it didn’t work out. The atmosphere wasn’t a good place to learn, and to be honest I was quite lonely. There were people I thought were friends, but they weren’t.
After the summer holidays I decided not to go back. I felt depressed, my confidence was quite low. I was doubting myself quite a lot after uni. It was the biggest disappointment of my life.
My career advisor told me about an employability course called First Impressions, First Experiences. I started in September 2014.
We learnt how to present ourselves; how to prepare for interviews. We did mock interviews, which were quite intimidating – I failed my first interview, but I passed my second! I feel much more confident for job interviews in the future.
The most important thing was making a great group of friends. They are my best mates. We still talk nearly every day on Facebook.
I learnt to be more self-confident. I feel more empowered as a young disabled woman, and it feels awesome!
As part of the course, I also went on placement. I went on a work placement at Scope for three weeks in their campaigns department. I learnt that there’s so much that goes into a campaign – so many little things – and that now it’s much quicker to get messages out there via social media. I designed my own campaign on inclusive education.
I’m volunteering at my old special school now. I want to work in special educational needs, as a teacher. I want to inspire the kids. I want them to know they can make the same journey as me.
Guest blog from Michelle Rundle. Michelle is an occupational therapist who supports disabled children and their families. She has previously written a book for Scope with a parent called Haylee’s Friends and has now written a new book called My Brother is an Astronaut.
About this time last year, Haylee’s Friends was launched by Scope. It is a story to help explain what cerebral palsy is to a young child. There were several comments from various people who read it, that there ought to be a series of stories explaining different disabilities to children and many suggestions were made as to what the next book should be about. One of the suggestions was autism.
Autism is a condition that fascinates me and has for a long time. More specifically, it is understanding how children and young people with autism might experience the world and how that differs from most people that is particularly of interest. I am very aware that understanding this can be a key part of helping these children and their families manage and get through each day, but that it isn’t always an easy topic to get to grips with as adults. It is even more tricky then for siblings, peers, friends and classmates. So the idea for “My brother is an Astronaut” was born. Oddly enough, I knew what the title was going to be before I’d even written the opening sentence!
I know that there are lots of children – and adults! – in the world whose sensory experience and therefore understanding of the world is a little “different”. It isn’t the exclusive domain of people with autism, so autism isn’t mentioned in the story. People with ADHD, ADD can have difficulties in this area too, as well as some children who are a bit “quirky” and don’t fit into any particular category. This book is written for them and for those they spend their days with to try and help give an insight into their experience of the world. It was written with children aged 5-8 in mind, but could have relevance outside of that age range.
Condensing all of the possible sensory processing tendencies and differences into a short children’s story is not possible and I did not want to over simplify it either. So it is perhaps most useful as a starting place to recognising that there might be diffirences and realising that sometimes there is a reason why children in the classroom or at home do things that are a bit annoying or don’t seem to make sense. It won’t provide the answers, but it will hopefully get people thinking.
In writing it, I have included some of the tendencies and habits of a range of children that I have met and worked with in my job as a paediatric Occupational Therapist over the past 20 years. They and their families have taught me so much. I do wonder how many will recognise their child’s particular “quirk” when they read the book. I hope they do!
A guest blog from Emma, author of Haylee’s friends, a new story book for young disabled children.
About a year ago my daughter, Molly, became aware her left hand didn’t always do the things she wanted it to do. Sometimes she got quite cross with it when it was uncooperative. It has a habit of going off at an unhelpful angle which is awkward for her and gets in the way.
Molly’s frustration prompted me to look for some books to help explain in simple terms what cerebral palsy is. Unfortunately, there wasn’t anything that was child friendly or presented cerebral palsy in a positive way.
After some encouragement from friends, and of course motivated by Molly’s questions, I contacted Scope to see if they had any story books to help Molly understand. As our conversations went on I asked if they would help me write a book to answer these questions, they agreed.
I arranged to meet one of the Scope team at the Kidz up North exhibition 2012 to discuss our ideas. Whilst at the exhibition I bumped into Molly’s occupational therapist Michelle and we got chatting about what I was doing at the exhibition.
A couple of days later Michelle emailed me offering to write the book with us, and so the project started. Michelle had never written a children’s story before but it was on her “one day I would like to do” list, all she needed was some inspiration! After a few luxury hot chocolate meetings, the story started to take shape.
Michelle spoke with speech and language and physiotherapy colleagues to hear what they would like to have included in the story. She also met up with a family that she has been involved with for a number of years and asked both the parents and the older child with cerebral palsy, “if this book had been around when you/your child started school, what would you have wanted it to say?”
The answers were to provide the central theme of the story.
“Never say it is all going to be okay, because it isn’t. But if you do your exercises and wear your splints, it can make things a lot easier”. And “however hard it is and however much you don’t want to, always answer your child’s questions truthfully”.
Throughout the process of developing the story, Molly insisted on being part of it, giving us lots of inspirational ideas and letting us know if she didn’t like something. She vetoed some of the illustrations, like the original pictures of Lilly, the walker, which were met with a very disapproving face from Molly! She also gave us suggestions of what to include, like using her fork and knife and helping to name the characters. Most importantly, she wanted our family dog to be the model for Toby in the illustrations.
Now Haylee’s Friends is published Molly is our best advocate for it. She loves sharing it with anybody willing to sit down with her. Visitors to the family home this summer have all benefitted from Molly sharing “her” book with them and her school friends have commented that “it tells you the things that help Haylee” and “I like the bit when the lead gets tangled up.”
The story has really helped Molly to understand why her body behaves like it does and it has helped her to share this new understanding with the people she meets. Now we hope that Haylee’s Friends helps other children, their families and friends in the way it has helped Molly. Already it is making its way into primary schools in the Harrogate District, it has been shared at Portage training sessions and is appearing in Children’s Centres, Child Development Centres and libraries.
We are all so excited and we hope to have a celebration and launch somewhere local to where it was written and where the hot chocolate was drunk very soon.
Scope’s Chair, Alice Maynard, has been recognised for her significant contribution to society by the University of York. The University, where Alice also did an undergraduate degree, has given her an honorary degree.
Alice has been chair of Scope since 2009. She is also founder of Future Inclusion Ltd, which works to encourage good governance, inclusive practice and ethical business.
Alice was previously Head of Disability Strategy at Network Rail, and in 2001 was seconded to Transport for London where she developed its first social inclusion plan.
Here is an extract from an interview with York Vision, in which Alice describes what the honorary degree means to her…
Firstly, congratulations! What does honorary degree from the University of York mean to you?
Thank you. It’s amazing. It’s a bit like getting to the top of Everest (not that I ever have) without actually having to make the effort to get there. It was great getting the doctorate that I’d worked for, but I’d worked for it, whereas this is a real gift and an honour.
You have BA in Language from the University of York. How did your time at York help you become what you are today?
I had a great time at York. I learned a huge amount – not just about language and linguistics. It was a time when I really became a grown-up. I began to understand what I was capable of in the big wide world. I was effectively a fairly small fish in a big pond rather than being the big fish in the small pond that I had been in the girls only special school I went to as a teenager. But I did end up using my language and linguistics. When I left York I was working in the IT industry, and my second job involved localising a US product for the European market. I found my linguistics really useful for that. It made me a valuable team member, and enabled me to demonstrate what I was really capable of and really shine. It was in that job, and the subsequent job with another US company, that I really established myself in business and laid the foundations that helped me get my MBA, set up companies, and even chair Scope.
What are the biggest challenges for disabled graduates entering the labour market in 2014?
There are enormous challenges for any graduates entering the labour market in 2014. When I graduated, it wasn’t all sweetness and light – I had a choice between two jobs and, fortunately, the one I chose was secure. Had I chosen the other, I would have lost it straight away. They rescinded their offers to all graduates because of the economic conditions at the time and several of my student friends were affected. But I guess today part of the issue is there are just more graduates now than there were in 1980. So if you’re disabled, the competition is even more fierce, and although the attitudes of many employers have improved over the years, disabled employees can still be seen as a potential burden on the firm rather than a really valuable potential employee. Disabled graduates need to demonstrate even more strongly, therefore, what their ‘unique selling point’ is and find a company that will appreciate them. But they still need to look for somewhere they can work that they can really passionate about, though, because if you enjoy your work you’re most likely to shine – and doing something you hate is pretty miserable anyway!
What do you hope to achieve as chair of Scope?
At the very least, I’d like to think I’ll leave the organisation in a better place than I found it and give the next chair a solid foundation to build on. But really I want to make sure that when I step down in October this year I leave an organisation that is fit for the future and better able to achieve its vision of a world where disabled people have the same opportunity to achieve their life ambitions as everyone else does. To do that, I have to make sure that the Board is fit for purpose: that the right people with the right skills, who are passionate and knowledgeable about the issues, are round the table, and that they work effectively as a team. Then they can both support and challenge the Chief Executive and his senior team as they implement our strategy so Scope can drive the change in society that will move us all ever closer to that vision.