In the last couple of weeks I’ve been working on a big funding bid at work for our inclusion project. In the process I’ve looked at a lot of research by some great organisations and it got me thinking about all the fantastic groups and services that have helped me and the families I support. Because I’ve worked in the field of disability and am a disabled person myself, I’ve built up extensive knowledge of what’s available. And because not everyone’s in the same position, I thought I’d create an A-Z of essential information. So here goes:
Arts – Art and creativity has been a powerful and positive force in my life, particularly since my tics intensified. At the time when I was struggling with changes in my body and circumstances I discovered the disability arts scene. This was thanks to the amazing Liberty Festival, which opened up my mind to new possibilities. There are some fantastic organisations supporting disabled artists and working to improve access and inclusivity within the arts sector. Check out: Shape Arts, Unlimited and Disability Arts Online.
Bespoke Products – Products and practical solutions to some of my challenging tics have made a massive difference to me – see Inventions and Interventions further down. Lots of products are ready-made but some challenges require a more bespoke solution, and that’s where Meru, Remap and the Cerebra Innovation Centre may be able to help.
Cinema Exhibitors Card – If you’re in receipt of Disability Living Allowance, Personal Independence Payment or are registered blind, you’re eligible for a Cinema Exhibitors Card that provides disabled people with a free cinema ticket for a person accompanying them in about 90% of the UK’s cinemas.
Disability Living Allowance (DLA) – DLA, or its more recent replacement Personal Independence Payment (PIP) is a benefit available in the UK which helps disabled people meet the additional costs of their disability. It’s non-means-tested and available to working disabled people as well as those not in work. I’ve written many times before about the vital role DLA plays in my life. Filling in the forms can be quite labour-intensive but there are some great guides available to help you, like this one aimed at parents, and this one for adults. If the result isn’t what you were hoping, appeal the decision – many people (myself included) have received an improved award once further information’s been submitted.
Education – I don’t have a great deal of personal experience of the difficulties of ensuring that a disabled child has a positive experience of school and receives the right support, but I do know there are some great services to help families negotiate the system. A good first port of call is the SEN advice service. If you’re a disabled student consider an application for a Disabled Students’ Allowance – see below.
Factsheets – I’ve regularly found myself being guided through a new or difficult issue with the help of a factsheet. The Disabled Living Foundation has factsheets about practical solutions and products. Disability Rights UK has fantastic resources on a wide range of subjects including benefits, work, independent living, transport, welfare reform and loads more.
Grants – Products relating to disability often have a higher price than those that don’t. There are a number of organisations that can help with the cost of this sort of thing and there’s a useful list of them here.
Helplines – Finding information for yourself can be really useful but sometimes you might just need to speak to someone. Tourettes Action have a great helpline which I’ve used many times and the Samaritans, Carers UK, Mind and Contact a Family all have one too, along with many others relating to specific conditions.
Inventions and Interventions – Five years ago I was struggling to find medication that would control my tics without having equally disabling side effects. Deciding to find solutions on a practical, rather than a ‘brain’ level, felt right for me. Many products that help are ready-made and available to buy (albeit made for different purposes). For example: padded inner gloves, volleyball knee-pads, chewys, arm guards and camping cups. There’s a full list of things that help me here. Sometimes a more personal solution’s required – see bespoke products above.
Join In – getting involved can take many forms. It can be through disability sport organisations, the arts, local social groups or through campaigning and activism. Have a look at Disabled People Against Cuts, Transport for All and The People’s Assembly.
Keeping Notes – Whether it’s a list of tics or a list of non-Blue-Badge-holders parking in the disabled bay outside the castle, I’ve found keeping records useful many, many times. It’s not my first instinct but I’ve learnt what an important role documentation plays. When my ‘ticcing fits’ first started, Leftwing Idiot suggested noting down the details about each one – this has been really helpful for my doctors and social workers and in more creative ways too. It also means I can check if things have improved, rather than just feeling they might have.
Law – Disability’s a ‘protected characteristic’ under the Equality Act 2010. This legislation provides legal protection from discrimination to disabled people. I’ve found knowing about the Act very helpful because it gives me the confidence to speak out when something isn’t accessible or inclusive. Making a ‘reasonable adjustment’ for disabled people isn’t just a ‘nice’ thing to do – it’s a legal duty. But despite this, many disabled people still face discrimination and challenging situations. This will only change if it’s challenged. If you need legal advice and support, try getting in touch with the Disability Law Service who offer free information and advice to disabled people.
Models Of Disability – By this I don’t mean crutches crafted out of matchsticks, papier-mâché wheelchairs or balsawood assistance dogs! I mean the models people use to think about or approach something.
For a long time the usual way people thought about disability followed the ‘medical model’ (many people still do). This says that a person’s disabled because their body or mind is impaired. It focuses on what’s ‘wrong’ with the person, not what the person needs. The ‘social model’ says that disability’s caused by the way society’s organised. For example, if I as a wheelchair user can’t get into a building because of some steps, the medical model would say this is because of the problem of my wobbly legs. In contrast, the social model sees the steps as the disabling factor.
People are often nervous about calling me disabled because they think of it as negative. I don’t see it that way at all. For me, saying I’m a disabled person acknowledges that I face barriers because of how things are set up. But if these barriers are acknowledged, they can be changed.
Learning about the social model was life changing. I suddenly realised it wasn’t my tics that were the problem but the fact that difference hadn’t be considered in how things were arranged. Understanding my life in this way raised my confidence and expectations and, most importantly, meant I could be part of making it better. I know that learning about the social model has been similarly transformative for many other disabled people. You can find out more about it here.
Nights Out – Are you looking to let your hair down? Euan’s Guide is full of disabled access reviews written by disabled people. Also, if you’re into music, check out Attitude is Everything who are working to improve disabled people’s access to live music events. If you’re interested you can sign up to join their team of mystery shoppers.
Occupational Therapist (OT) – A big element of an OT’s job is to identify and eliminate barriers. They work in lots of settings, including Councils, health services and work places. My Local Authority’s OT team have helped make the castle a safe and easy place for me to live by providing ramps, grab rails, padding and an inflatable bath lift. If you think an OT assessment would help you, contact your local council or ask your GP.
Podcasts – In my early twenties my tics began to intensify, and I didn’t feel able to talk about them without tears. But I came across a place that was talking about difference and disability, and it was doing it in a funny and accessible way. This was BBC Ouch. This micro-site became my go-to place for information and laughter. Through the Ouch podcast I discovered some amazing comedians like Francesca Martinez, Liz Carr and Laurence Clark. Ouch doesn’t exist in quite the same form any longer but the archived site can still be found here. The podcast is still going though and you can listen here. Another great and funny disability-related podcast I’ve recently discovered is Abnormally Funny People, and for a slightly more serious perspective check out Disability Now’s podcast.
Questions – For a long time I lived in fear of someone asking me about my tics. This was because I didn’t understand them and also felt uncomfortable about the way I moved and made noises. This was largely because I’d been too afraid to ask questions. If I could go back in time and give my younger self one bit of advice it’d be that questions aren’t scary, they’re brilliant. Ask them yourself, and encourage other people to do the same. I’ve seen attitudes change and opportunities open up all thanks to a quick question and answer.
Support Plans & Social Care – In 2011 I was really struggling. My mobility deteriorated, I was living on my own up a flights of stairs and I began experiencing ‘ticcing fits’ which took me from feeling totally fine one minute to being in serious danger the next. I spent more time than I admitted unable to get up off the floor on my own. It felt as if my independence and quality of life were slipping away. Reluctantly, I called my local Adult Social Services team to ask for help and this quickly transformed the quality of my life and that of my friends and family.
I was assessed by a fantastic social worker using the ‘fair access to care’ procedure. This resulted in me being given a personal budget, which I can use to pay for my support. Without it I’d either be at serious risk or totally dependent on my friends and family. My personal budget means I can live independently and safely. If you’re struggling or in danger please don’t put off asking for help. Get in touch with your Council or local disability advice service, or speak to you GP.
Technology – There are a few key bits of technology which I rely on heavily – my computer to organise my support schedule, my phone to keep in touch with my support workers, family and friends, and my telecare system which means I can spend short, but much-valued, periods of time at home on my own with someone on call nearby. There are many apps that have made big differences to disabled people – you can read about some of them here. If you’ve found a particularly good app or piece of device please share it in the comment section below.
University – I had a great time at university even though it was during this time that my tics began to have a bigger impact on my life. I received a Disabled Students Allowance (DSA) which helped me a great deal. This non-means-tested grant is available to students to help meet the extra costs associated with their study because of their disability. There are impending cuts to the DSA but fortunately they seem to have been delayed. Most universities will have a disability officer or student support centre, and I found this really useful when I was at Uni. You can find out more about life as a disabled student in BBC Ouch’s student diaries.
VAT Relief – Don’t forget that if you’re a disabled person certain products are VAT exempt – there’s more information about this here.
Work – I’ve written many times in this blog about the important role Access to Work (AtW) plays in my life. This government scheme provides the specialist support and equipment disabled people need to do their jobs. AtW pays for my support worker and for travel to and from work. It’s also covered the cost of specialist equipment like my all-terrain wheelchair.
AtW has meant I’ve been able to continue working in a job I love despite my increased need for support. My experience of AtW has largely been very positive, though recent changes have made it harder recently. Another service I’ve found useful at times is the Advisory, Conciliation and Arbitration Service (Acas) – an organisation that provides advice to employees and employers on a whole range of issues. If you’re facing challenges at work it may be worth giving them a ring – information about their helpline is here.
Xplain – Ok, I know explain doesn’t really start with an ‘x’ but I was really struggling to find something relevant that did. Developing the language and confidence to explain my tics and experiences has been more positive than any other intervention or treatment. Some people find information or ID cards like this or this or this useful. You could also make your own, or practice ways of responding to common questions or situations.
Your MP – Your local Member of Parliament may be able to help if you’ve got an issue or situation you’re finding difficult to resolve. You can find out who your MP is here. Remember, they’re your representative in Parliament so make sure you get in touch if you have concerns or opinions about policies or issues that are being proposed, debated, or need to be challenged.
Zzzzzs – Sleeping well is really important and can make the difference between having the energy and resilience to cope, or not. There have been times when I’ve found sleeping difficult – a weighted blanket, medication and a consistent bedtime routine have all helped me. If you’re struggling to sleep, speak to your GP and if you’re the parent of a child with a neurological condition you may also be interested to know about Cerebra’s Sleep Service.
This list isn’t exhaustive but I hope it’ll be a useful starting point. If you know of a service, website or product that’s helped you, please add it the conversation by commenting below. Together we can create a resource that pools our knowledge and experience and can help everyone whenever they need it.
“The stars have gone carolling in Neasden.”