I am in full control of my care needs – #100days100stories

Growing up, 24-year-old Holly never thought she would move out of her family home. Now she lives in her own flat and manages her care. Here Holly shares her story as part of our 100 days, 100 stories project.

I’m Holly, I live in Portsmouth and I have cerebral palsy and scoliosis. My disability means that I have little use in my arms and legs so I use a wheelchair and have a team of personal assistants (PA’s) to help me live independently.

Growing up

Growing up I lived a relatively normal life; I went to mainstream school, got my GCSE’s and A levels, had friends and fought with my siblings.

But I never really imagined moving out of home. I thought, even though I was the eldest I would be the last to move out, if I ever did, and I guess I thought my disability was a barrier.

But back when all my friends were moving away for university I had a sudden change of thought. I decided to apply to university 200 miles from home.

Moving out

Three months later I moved out of home and moved into halls. Like most freshers, I found the first few months really stressful with the distance and sudden responsibility. But for the first time in my life, I was being cared for by strangers and this was daunting.

For three out of what became four years at university I used care agencies to help meet my care needs. In my last year, due to inadequate support, I decided to become an individual employer and recruit my own team of PA’s.

I haven’t looked back since. I am in full control of my care needs, I choose who works for me, which is better than having around 20 different carers per week, and I can choose exactly what times they work.

Being independent

Having my own team means that I can go out and live a fully independent life.

I would advise anyone who doesn’t have the right support to consider being an employer. The set up is a little difficult but is so worth it in long run. Skills for Care offer a free ‘Employing Personal Assistants’ toolkit that contains lots of useful information.

And be sure to ask your social worker if they know of any services that help those who employ their own PA’s. For example in Portsmouth I volunteer on the ‘Portsmouth PA Noticeboard’, which helps employers find personal assistants and helps personal assistants find work.

Blonde smiling young woman with graduation hat
Holly graduating from university

I have graduated from university and am now living in my own flat with my two pets. I advocate for disability rights and awareness through volunteering and writing a blog about my life.

I do not think any of this would’ve been possible without the right care and support, I just wish I’d found it sooner!

Find out more about Holly at her blog.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.  

I never want another parent to feel how I felt which was rock bottom – #100days100stories

Tracy’s son Reigan, 13, has a range of conditions including autism, ADHD and Tourette’s syndrome. Getting the right support for him has been difficult, leaving Tracy isolated and depressed. Here, she explains how Scope’s befriending service helped her turn their lives around.

Tracy shares her story as part of Scope’s 100 days, 100 stories campaign.

I always knew being a single parent was going to be hard, but when my son was born he was a much harder child than I had imagined.

Tracy and Reigan smiling at the camera

He would sleep just fours a night. He was hyperactive; you couldn’t reason with him, you couldn’t get through to him. He lived in his own little bubble.

A diagnosis – now what?

His first diagnosis was actually a relief: I wasn’t a bad mother, I didn’t have this naughty child – there was something wrong. But I had no support whatsoever. I was told ‘your child has ADHD; here’s a leaflet’ and that was it. I didn’t know where to go or what to do.

I was suffering from depression and I felt isolated from other parents in Reigan’s school because of his extreme behaviour and kick offs. On one occasion he threw a chair so they moved all the other children out of the classroom for their safety.

Feeling isolated

Then a parent started a petition to have my child removed from school; it said that children like my son shouldn’t be in class with ‘normal children’. It was heartbreaking because not only was I being isolated, but my son was being isolated too.

Another time, all the children in Reigan’s class were invited to a birthday party and my son was the only who didn’t get an invite. What can you say when your child asks ‘why haven’t I been invited when everyone else has?’ It is horrible, really horrible.

Support when I needed it most

I heard about Scope from another parent. I went to a meeting and, in the two hours I was there, I received more support than I had in the previous six months. I was also referred to Scope’s befriending service, Face to Face.

It was such a relief to talk to someone who knew what I was going through, another mum of a disabled child. My befriender put me in touch with loads of organisations that could help us. Having her there to listen to my concerns gave me a level of strength I hadn’t had before.

I decided to move Reigan to a new school. Through my befriender, I got in touch with the Autism Team, a local authority service. They came in and explained to his teachers what autism is and why Reigan sometimes behaves differently.

Support for Reigan

The school put strategies in place to help. For example, if they saw Reigan getting agitated they would let him go to the playground on his own to calm down. It made a difference to Reigan’s behaviour almost immediately.

I had a befriender for just three months but I can’t express what a massive change it made to my life. It was the kick start for me getting everything back on track: I had the power to shape what was happening in my child’s life.

Making friends

Another great thing is the social life! We had gone from being socially isolated to having lots of friends. Through Face to Face, I met lots of parents with disabled kids. They didn’t blink an eyelid if Reigan started kicking off in the street. Nobody judged us or blamed us. They accepted us and that felt amazing.

I never want another parent to feel how I felt which was rock bottom. That’s why I became a Scope befriender. It is lovely to go along on a journey with somebody and see them come out the other side.

I’m so proud of Reigan

When Reigan was at his first primary school, the head teacher said he had no future. Now he is 13 and thriving at a mainstream secondary school. He’s top of his class for science and maths. He’s got friends and he’s very independent.

I truly believe that without Face to Face and the support we received from other organisations as a result, we would be in a very different place right now. Reigan just needed the right support to unlock his potential. I’m so proud of him.

Find out more about our 100 days, 100 stories campaign, and read the rest of our stories so far

Why you should apply now for the Susan Cook scholarship at Campaign Bootcamp

Last October, Becca Bunce spent 6 days at Campaign Bootcamp – learning how to improve her campaigning skills. Scope is sponsoring two further places at the next Campaign Bootcamp which starts in June. Here, she explains why she thinks you should apply for the scholarship. 

Campaign Bootcamp is a year-long training programme for anyone who wants to learn how to campaign effectively. It starts with a week of intensive training, followed up with further training, mentoring and support.

My campaign interests are women and disability

Did you know disabled women are twice as likely as non-disabled women to experience domestic abuse?

Did you know that disabled women are less likely to receive help from domestic violence support services because they are less likely to believed?

I did know these facts.  I also knew I needed to get this information out there and change this reality for other women. I was daunted by the size of the challenge .

And that’s where Campaign Bootcamp came in – it’s one thing knowing you need to campaign, it’s another thing actually campaigning.

And then came another factor- disability

Having an impairment can be a right pain in the arse. There are always extra steps to think about before you can get on with your campaigning.

I needed to know how to campaign and I also needed to work out the life-hacks I can use to make campaigning work alongside the joys of chronic illness.

Campaign Bootcamp and the Scope Scholarship

The Campaign Bootcamp team made sure the programme worked for me in developing and integrating my skills whilst taking account of my impairment.

They didn’t only work like this with me.   Campaign Bootcamp recognised and celebrated all participants as individuals within the group.  We built on our strengths, were supported to overcome our weaknesses and showed that failure should be celebrated and learned from, rather than hidden.

I could talk to the team and work out how to get the most from each day. There was no awkward ‘displaining’ where people tried to tell me how my disability worked or what I could or couldn’t do. I didn’t have to worry about how to minimise how disabled I seemed – or worry about what other people thought.

I could just get on with what I was there to do: learning how to campaign.

I can’t really explain just HOW MUCH I learned

Rebecca Bunce

Bootcamp gave me access to a wide network of support and tools to take things forward. And opportunities just kept coming up – whether chairing a meeting in the House of Commons for Operation Disabled Vote or talking at Women of the World festival about disabled women’s experience of rape.

Currently, alongside other Bootcampers, I’ve started the #ICchange campaign to demand government action on ending violence against women. (Nudge, nudge: check out the website and sign the petition!)

My biggest lesson of all though, is I’ve learnt just how much the obstacles I thought of as immovable, can be broken down. (Cheesy right?) But, if you want proof – you now know that disabled women are twice as likely as non-disabled women to experience domestic violence… and that you can sign a petition to help create change in support services… so that’s an alright bit of campaigning for me!

If you want to break down barriers, apply to Campaign Bootcamp today.

What does autism mean to you? – #AutismIs

Today’s World Autism Awareness Day. Ambitious about Autism are marking the day by asking people to share what autism is to them (using #AutismIs).

Sarah Pounder, who’s written about the realities of bringing a child up with severe autistic spectrum disorder, has written a guest post for us about what autism means to her:

JamesMy son James was given an official diagnosis of Autistic Spectrum Disorder at three years old. He is severely affected by this condition. He also has a diagnosis of sensory processing disorder, Attention Deficit Hyperactivity Disorder (ADHD) and severe learning difficulties. I want to be brutally honest with you when I tell you what Autism means to me.

Autism is a long journey

Autism to me is a long journey of ups and downs, it’s been very tough, it has given me a lot of worry and heartache. James stopped waving bye when he was ten months old, he lost all imitation skills and and his eye contact was non existent. He wasn’t interested in people, he appeared to be in a world of his own. It was like he was under thick ice and I couldn’t get through to reach him. He had explosive tantrums of lashing out and he also self harmed. I had no experience of autism and even the professionals around us were no better. They couldn’t provide us with any coping strategies that worked with challenging behaviours. He was nearly five years old and he was still in nappies and he couldn’t speak.

Autism can be frightening

When you are a parent of a child with the condition of severe autism it can be a frightening experience. I have felt alone and desperate with no where to turn. I found an early intervention therapy known as Applied Behavioural Analysis (ABA therapy). The therapy left me astonished – the progress that he began to make came thick and fast. They got him out of nappies within six weeks, they did intense speech programmes that got him to talk and they even taught him how to wave bye, bye again. They also gave me sound advice and strategies to cope with James’ self harm behaviours.

Autism meant a battle for the right support

Our local education authority fought us in tribunal,they were against the therapy and thought that their preferred school could meet his needs, even though they knew that he had previously attended their school for two years and made no progress. All they wanted to do is save money. We lost in high court and he went back to the local authorities special needs school, he was there for a further three years and the progress that he made was non existent. James is eleven now and has since started in a new school in September 2014, and he currently has a full-time ABA programme, you guessed it the progress again is so apparent even in this short space a time. His language and understanding is getting better everyday, he is starting to write his name and he is really happy. His dad and I are really happy too, this therapy has given us real hope for James and his future.

Autism has made me stronger

I know that I have said some negative things about James’ autism and I want to leave you with some positive words of what autism means to me. My son has been one of my biggest teachers in life his autism has taught me a lot, he has opened my mind up to many different things and helped me grow as a person both spiritually and mentally. I feel my experience of autism has made me a better, stronger person in a lot of ways; it has taught me not to judge others, have more understanding and patience and to be more compassionate towards others.

Autism is surprising

One thing that I really want to say is this, please never give up, always have hope and do not stop until you get what your child needs. These children have great potential with the correct help and support and like James he surprises me everyday and I now feel like the possibilities are endless.

Join Ambitious about Autism for #AutismIs 2015.

Being disabled gives me a unique insight which helps me at work – #100days100stories

Emma Satyamurti has this week been made a partner at the law firm Leigh Day. She tells her story about why she pursued a career in a law and being one of too few disabled role models in the legal sector. She shares her story as part of our 100 days, 100 stories campaign. 

I decided to become a lawyer because I wanted to do work that would be interesting and intellectually challenging, but which would contribute, in however small a way, to making the world a better place.

It was a leap of faith, my background had nothing to do with the law. I had studied Classics at university and had never been anywhere near a legal textbook.

Emma looking at the camera for a press photo

I was lucky enough to get a couple of work placements with law firms, and a place at law school where I obtained the qualifications I needed to become a solicitor. But I was still undecided about what kind of law I should go for.

During my training contract, which is the two year period of ‘on the job’ training you have to do before you can qualify as a solicitor, I spent six months in an employment department, I realised then that this was the area of law I wanted to specialise in when I qualified.

I saw at firsthand how important work, and feeling valued at work, is to people’s well-being and self-esteem, and how damaging it can be when things go wrong.

I have been an employment lawyer for over 10 years now, acting almost exclusively for employees.

I have been able to help clients facing a wide range of issues and problems including being sacked unfairly, suffering bullying from line managers, and being treated badly for blowing the whistle.

Over the years, I have seen how one particular form of mistreatment can have an especially devastating impact – discrimination.

There is something about being singled out for negative treatment because of some aspect of who you are, such as your race or your gender, that can cut to the heart of a person’s equilibrium and sense of self.

As a disabled person myself, I understand this from a personal, as well as a professional, point of view.

While I have been lucky enough not to experience discrimination directly, I know what it feels like to be ‘different’ and to worry that I am not seen as ‘normal.’

For example, when I meet a client for the first time, I am acutely aware that they are probably not expecting to be greeted by a four-foot tall solicitor with mobility issues.

I have never encountered any kind of adverse reaction, but I am aware of taking a (metaphorical) deep breath before entering the reception area, and of consciously projecting a confident and relaxed persona to put the client at ease.

I never know what the client is actually making of my appearance and whether there is any need to reassure them or not, but this sense of never quite knowing how one is received by others is perhaps one of the complexities of being ‘different’.

While this can feel uncomfortable, I think it is a strength and means that I can draw on more than legal knowledge in my work with clients.

Being happy at work really matters, and I feel very lucky that my own work enables me to help people get closer to that goal.

I have in the last very few days been made a partner at Leigh Day, and I am looking forward very much to the enhanced scope this will bring to further develop that work.

Find out more about our 100 days, 100 stories campaign and read the rest of the stories so far.