Category Archives: Real life stories

Being a parent – It’s kind of mind blowing to me

Phil Lusted is a web and graphic designer from north Wales who has most recently appeared in the BBC One documentary, ‘Big Love’.

Phil’s partner, Kathleen has a young daughter. For Father’s Day, Phil reflects on the things he is learning through being a parent with dwarfism and his hopes for the future.

Being a parent has opened my eyes to a lot of new things. I now have a child who looks up to me when she is in need of help or taking care of. I now have a responsibility to take care of our child when Kathleen is busy or needs assistance. It’s kind of mind blowing to me, in a good way. We are now officially a family and a team who strives to help, learn and care for each other through life.

I consider myself blessed to have met Kathleen’s daughter from her young age, as it’s beneficial we both learn to adapt together as she grows up. We have already learned so much from each other.

She often asks me for help when it comes to getting dressed, putting on her socks and shoes, jackets, and so on. During bed times she enjoys settling down with me as I read her a bedtime story, and we often have a giggle together before sleep time.

A man with dwarfism and his partner, a non-disabled woman, smile and laugh on a beach
Phil and his partner, Kathleen, are looking forward to raising their child together

Being a dwarf parent has its own challenges, as I do some things differently in comparison to an average height person and there are also situations where I cannot always manage. Often I can be hard on myself and feel down about the fact I wish I could do more in the way of being able to pick the baby up and carry her around when needed. I’m blessed to have Kathleen’s patience, as she reassures me that I am doing enough.

Below are just some of the things I’ve learnt as a parent so far.

Pull-ups instead of diapers

Diapers are a real struggle! Mostly because I find it fiddly to deal with my fingers (I was born with no knuckles), so pull-ups are a great alternative that myself and our child can manage without too much of a struggle.

Using a smaller/lighter stroller

Kathleen has an umbrella stroller in which I can easily manage to push around when it comes to getting out and about. It works a wonder for myself, the handles are low and the stroller is easy to push.

The safety harness

It’s not often the baby will try and outrun me, she’s very calm and will stay close, but using a harness on her to keep her close is always handy. That way, she is not needing to be carried and she also gets to walk around.

When I use a step

Keeping things out of reach from our child is important. I use steps to reach those particular things, or to do the dishes, brushing my teeth. Sometimes she will try and climb up on the step with me, so explaining to her that it’s not safe is important, we don’t want her falling and hurting herself!

A man with dwarfism and a non-disabled woman walk on a beach
Phil and his partner, Kathleen, on a photoshoot

I am excited about the journey of being a parent to this wonderful child as she gets older, learns, and grows. It is so nice and comforting to be able to form such a strong bond with her. I care so much for this child and her happiness.

Head to Scope’s website to read tips suggested by community members about pregnancy and parenthood for disabled people.

You can also join the discussion on Scope’s online community and speak to other disabled parents about their tips and experiences.

Why the fashion industry needs to include disabled people

Meghan is studying fashion at the University of South Wales. For her end of year show she designed a sportswear line which is specifically adapted for different impairments. In this blog she talks about the reasons behind it and her hopes for the future.

At school I was good at Product Design and Art, so I knew I wanted to go into a form of design. I wouldn’t really say I was a big fashion person in the typical sense which is why I wanted to do sportswear – it’s design for a purpose.

Discovering a gap in the market

I’m in my third year now and I have to do a final collection. I started looking into adapted clothing and I discovered a massive gap in the market. A lot of the people I spoke to said that the clothing that is out there is quite unfashionable or really expensive. There’s not enough choice for them in mainstream fashion.

I feel like the fashion industry does forget disabled people. When it comes to adaptive clothing, there are maternity sections in shops but disability is almost completely forgotten about. All the clothing is just t-shirts and trousers, there’s nothing stylish, which is what they want.

 

Molly posing on the catwalk

In some ways it sends a negative message to disabled people regarding sports and they might not feel confident enough taking part in sports or going to the gym, especially if they are wearing something they aren’t comfortable in themselves. But I think there has been a change in attitudes more recently because I have been seeing more representation, but I also don’t know if that’s because I’m involved in it, so I’m noticing it more.

Accessibility can be an issue too. The girl who I have as my visually impaired model, she’s got her own business helping websites and apps make their stuff more accessible for disabled people.

Kyron posing on the catwalk

Developing my sportswear line

After talking to various people, I decided to design pieces to suit four different impairments: visual impairments, dwarfism, amputees and down’s syndrome. I got in contact with a charity called “Follow your Dreams” which is for people with down’s syndrome and learning difficulties. I went to a few focus groups with them to meet people who have down’s syndrome and to get information about what they would want out of clothing and sportswear. I also spoke to Disability Sport Wales.

The Fashion Show

For the show, I had four outfits shown and I used the same models that I’ve worked with on my photo-shoots. I’ve got Tony, who is a world champion athlete, Kyron who is a Paralympian. Molly, who has ushers syndrome and runs her own company – Molly Watts Ltd – and finally, Emily who has down’s syndrome. The show was on 26 May and was a great success.

I really wanted to have all disabled models because otherwise it would completely take away the impact. I just hope that I raise more awareness from it and show people what’s possible.

If you have an experience you’d like to share, get in touch with the Stories team.

Photos by Michaela Harcegova.

Employing disabled people isn’t just about building ramps

Abbi was born with a genetic bone disease called osteogenesis imperfecta, also known as ‘OI’ or brittle bones. In this blog, she talks about some of her own experiences and what she thinks needs to be done to support disabled people in and out of work.

I was very lucky to get a job straight out of university. I work in a large advertising agency in London which can afford things like a wheelchair accessible office, ergonomic furniture and any software I might need. My physical access to my office is faultless, but employing disabled people isn’t just about building ramps.

Having the confidence to ask for what you need

When I started my job, I was never given the opportunity to explain what my impairments are and what effect they have on my life. As a junior employee, I didn’t feel comfortable asking for that conversation.

After a year of working 10 to 12 hours a day, five days a week, when I could no longer disguise my illnesses my employer didn’t know how to respond. I ended up having to take an entire month off work for reasons which could have been avoided had I felt comfortable explaining my conditions, and asking for a little flexibility, earlier on.

My agency is now working to make changes to my role but it’s been a real knock to my confidence in the workplace and has had a real effect on my mental health.

In my experience, many disabled people at the moment have a real fear of appearing as a financial burden to employers. That’s wrong, but it’s a position with which I can only empathise.

Abbi, a young disabled woman in a wheelchair, smiles and poses for a photograph

Everyday Equality by 2022

We live in an increasingly technological world, yet many employers consider employment to mean being physically present in a place of work, nine to five, five days a week. That’s something that for many disabled people is simply not possible. It’s something that I’m not going to be able to maintain forever and it’s not necessary to do a good job.

The key is flexibility. We need to create a culture in which disabled people feel confident asking employers and potential employers for what extra flexibility they need to do a good job. Whether that’s working four days a week, reduced hours, working from home or just taking a lie down once a day, a little flexibility can make all the difference for disabled people, especially those with fluctuating conditions.

Tell us what would help to improve your work opportunities

Scope is calling on the next government to improve disabled people’s work opportunities.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What would help to improve your work opportunities? Email the stories team and tell us your experience – stories@scope.org.uk 

You can also join the conversation on social media by using the hashtag #EverydayEquality.

I still don’t have the support I need to live a full life

Josie, from Bristol, was a nurse until 2008, when she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with mast cell activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Some days I barely get to speak to anyone

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean. I get two hours every two weeks “social” time which at best on a good day gets me over the park and back .

It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

Josie, a disabled woman, and her daughter

What the right support would enable me to do

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

Everyday equality by 2022

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Tell us what living independently means to you  

Scope is calling on the next government to improve social care for disabled people, so they can live the life they choose.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality.

Paying extra to live my life

Jean has Ehlers-Danlos syndrome which means her joints dislocate easily and she is in a lot of pain. In this blog she talks about her experience of extra costs and shares her hopes for the next government to bring about everyday equality for disabled people by 2022.

I came home from work one day, fell over, was taken to hospital because I couldn’t get back up. I came out of hospital a week later in a wheelchair. I was diagnosed with Ehlers-Danlos syndrome several years ago. Since then I’ve been trying to get on and live my life, but I face a huge range of extra costs which makes things harder than they should be.

The things I need to live my life

Many of them aren’t obvious. Things like adapted cutlery and kitchen equipment are vastly more expensive than an ordinary set. I’m supposed to have specialist knives to help me with preparing veg and things like that – with the handle at a 45 degree angle – but they are about £15 a blade. They are not covered by the NHS, you have to pay for them yourself, and we can’t afford them.

I’m a careful budgeter, tracking what I spend down to the penny, but I can’t scrimp on the things I needs or it can take a big toll. I have to eat a particular diet because my condition affects my gastric system, and if I am not very careful with what I eat then my gastric system will start going downhill. Our shopping bill comes to about £120 a week.

We had a situation a couple of years ago where we were living on essentially £50 a week, so we were buying the really, really cheap basic stuff. We managed to make sure we had enough to fill us but I was really ill. I was bed-bound for a year because I was having so many problems with my stomach and lower back and with pain in my hips and my pelvis. I couldn’t move.

I have all kinds of other costs. Some are really big. For example, I get a basic wheelchair provided for me, but I really need an ergonomic one to reduce stress on my joints, which is very expensive. You expect that any equipment you need you’d get from the NHS (you get for free), but you only get the very basics. It’s around £1,200 to £1,500 to get a wheelchair that suits my needs, and we couldn’t afford that.

Jean sitting at a desk with an open laptop in front of her
Jean struggles to pay for essential equipment that she needs to live

Everyday equality by 2022

People think that because you are disabled you shouldn’t be allowed to have a normal life – to do the same things that they do. I’m just trying to have a normal life.

My future vision for disability equality would be that all buildings and public spaces are built with disability in mind from the outset. Anyone can use accessible facilities but disabled people cannot use all facilities.

I would also like attitudes to change so that disability was seen in the same way as race, sex or gender – just an everyday difference rather than an inconvenience that has to be managed by companies, corporations and institutions.

I want disabled people to be involved (not represented but representing themselves) at all levels of responsibility. The old adage of “nothing about us without us” still isn’t utilised enough in my opinion.

Tell us what being financially secure means to you

Scope is calling on the next government to improve disabled people’s financial security.

You can read more about our priorities for the next government and how you can register to vote in this election.

What does being financially secure mean to you? Email the stories team at Scope and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality

Taking risks and the importance of support – why I wrote a book about my recovery

After an accident, Ben was in a coma for a month and has been working on his recovery ever since. He hasn’t let things hold him back, even when others doubted him. To give others hope, he’s written a book about his experiences. In this blog, he shares a bit of his story. If you want more, you’ll have to buy the book!

I got run over in the Dominican Republic. I was on holiday with my girlfriend at the time. It was the day before we left, we went out for a meal and we were walking back, literally a road away from our hotel, and a car span off the road on to the pavement and hit us both. It killed my girlfriend instantly and I was in a coma for a month. I had private healthcare insurance and that paid for me to go to a private hospital while I was in the coma and fly me back to England when I was able to travel.

Starting to recover

I didn’t know anything when I first came out of the coma. I couldn’t recognise people. My parents were there and my family but I couldn’t recognise that they were my family. To start with I couldn’t speak but that came back quite quickly.

I’d lost so much weight and I was so weak. The physio in the hospital was really good. They got me to do lots of things and my strength started to come back really slowly. Once I was out of hospital, the care team supported me for about 5 months. They were very cautious about what I could do. They wanted to risk assess everything. Fortunately I had a carer, Andrew, who’s now become quite a good friend and we just went out and did things. I think my recovery would have been worse if I hadn’t done that.

Head and shoulders shot of Ben

Basically the brain injury that I had is that my neurons were shaken up so much that they lost lots of connections to other neurons. You brain is just a bit messed up. I think over time the brain recreates those connections so it is something that generally gets better but I’m not there yet. Recovery is still an ongoing process.

Not taking no for an answer

I wanted to go to Glastonbury that year and the care team was like “no, not for three years” but that just made me more determined to go. They said recovery would take a long time, anyway and there were leaps I took to aid my cognitive rehabilitation. Leaps I took into the unknown that did help my recovery. These were leaps that people told me I couldn’t do, however, this made me more determined to do this.

Deciding to write a book

When I was seen by Hammersmith hospital they did lots of brain scans and showed them to doctors, saying “What do you think of this guy, how he’s doing?” and from looking at the scan they guessed that I would be doing terribly and would be in a wheelchair. When he told them that wasn’t the case they were like “Really? How?” – it just shows that brain scans aren’t the best way to predict someone’s future. So he said to me afterwards, you need to write about this because it will give hope to other people going through this.

I went away and thought about it a lot. I wanted to get lots of voices in and it took a long time to find someone who could edit it all together. It’s all about me and my recovery from lots of different points of view and it all comes together as a melange of different stories. To begin with it was incredibly difficult but it was good writing the bits from my own perspective, my take on things.

Front cover of Ben's book showing a profile of a person's head pieced together out of ripped up paper

I hope it helps people going through a similar experience

My experience really shows just how much support you need and how difficult it is to find the right support, but given the opportunity you can do a lot. My best support has certainly been from my family and friends but I’ve had help from people from all different walks of life. I hope people going through something similar would get something from it and also their friends and family. This has had an impact on me and my family, massively.

I don’t know what will happen next. I want to promote the book and see how that does. It’s been difficult having to change my plans. To begin with I was trying to get back to where I was, especially in terms of the job I used to do, but I’ve started to accept that some things will have to change. It’s been good to broaden my horizons.

To read more about Ben’s experience, buy his book here.

If you have a story you want to share, get in touch with Scope’s stories team or visit our stories page to find out more.

With dance you’re free to move the way you want. You don’t think about being disabled.

It’s International Dance Day so we chatted to Jess, a 13-year-old dancer, who was born with Bilateral PFFD. In this blog she talks about how she got into dance, what she loves about it and shares a couple of her performances. 

I was born with a condition called Bilateral PFFD. It means that my thigh bones didn’t develop in the womb. I am also missing the fibula, one of the bones in the lower leg. I was born with feet but they were amputated when I was two and a half. I’ve also had a couple of other surgeries to fix a problem with the bone in my right leg.

I got into dance when I was about 11 because I’d been watching a TV show called The Next Step. I really enjoyed the concept of dance and how it impacted on people’s lives. So that was the start of everything. We have a dance hall at my school so during breaks and lunches I’d go in there. We also had dance classes in year 7 and 8, which I really enjoyed. I don’t have dance classes now that I’m in year 9 but on a Tuesday after school I go to a break dance club, then I go to a contemporary dance club. That’s really fun as well.

I don’t think about being disabled

With dance I like the way that you’re so free to move the way you want to and it’s just a really nice, free environment. I really like hip hop and break dance because that’s fun to mess around to. I like contemporary dance because you can show emotions through it and it’s easy to let your anger out or let your sadness out or whatever. I really like Candoco which is a dance company of disabled and non-disabled dancers. I’ve done a couple of things with them.

When I’m adapting my dancing, I just kind of figure it out as I go along. Like, when people are fully using their legs, I might mimic that with my hands or cancel that bit out and carry on with the arms. I’m pretty good at moving across the floor. Practice helps too. Once you’ve done it, especially when you’ve been at a club for a while and you know the choreographer’s style of dance, you can adapt the moves. A lot of my dance moves are improvised – I just move with the music.

I also do wheelchair basketball and sitting volleyball. When I find a sport that I really like or I find that I can move really well with it, I stick with it. It’s nice because you don’t think about being disabled, everyone’s just the same.

Jess Dowdeswell 2

Focus on what you can do

My school is pretty good in terms of inclusivity. They helped me get into sports and accommodated me. It might have been a little bit difficult getting involved in dance at first because I have to adapt it but all the people I dance with are really kind and nice so I’ve been quite lucky.

My advice for other disabled kids would be: focus on the stuff that you can do, not what you can’t do. I haven’t really experienced any negative attitudes but I’m sure there are people who have their doubts. A couple of years ago one of my friends from church, who’s a teacher, was having a conversation with her class about sport and the kids were saying “oh disabled people wouldn’t be able to do sports” that kind of thing. So I  went in with my mum and had a conversation with the kids. It was good to be able to give them a different perspective.

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

Why we’re taking on the London Marathon for Scope

Vicky, Louise and Nina are running the London Marathon for Scope – “a charity close to our family’s heart”. In this blog, Vicky, her sister Mell and her nephew Moss, all talk about why raising money for Scope means so much to them, and why they are excited to take on this challenge! 

“My little sisters have decided to run the London marathon!”

They are raising money for Scope – a charity close to our family’s heart.

My eldest son, Moss, has cerebral palsy. Thanks to Scope’s support, and against the odds (prognosis was that he would never walk), he took his first unaided steps when he was almost four. To hold your child in your arms and be told that life would not be the same for him as it was for his peers was the hardest moment in my life. Scope gave us hope.

To be able to walk into school on his first day and be able to stand up in a bar and look at people in the eye when he was older – that was my goal. My son is now more independent than any other lad of his age I know. With the use of sticks he walked into his first day at school and he walks into bars on his feet often! To say I am proud of him wouldn’t even ‘cut the mustard’ (if that’s a real saying?)

This, I know was down to the support of Scope at the beginning of our journey. I am mega proud of my little sisters for doing this. I hope Scope’s support for parents continues as I honestly don’t know what we would have done without them.

“I’m so happy that my aunts are running for Scope”

Scope had a huge impact on my life. If it wasn’t for Scope and the encouragement from my mum I wouldn’t be able to walk unaided now. When I was a kid I was told I would be in a wheelchair for the rest of my life but that’s not the case and that’s down to Scope and my mum.

I’m so proud and happy  that my aunts, Vicky and Louise, are running for Scope. I didn’t realise they knew so much about how Scope helped me when I was growing up, so it’s great they are raising money for Scope. I work at Scope now so I really appreciate where the fundraising goes and how important it is.

I really hope to be there to support them on race day. My dissertation is due though so I don’t know if I can make it, but fingers crossed I can be!

Head and shoulders shot of Vicky and Louise smiling with a field in the background

“I’m really looking forward to marathon day”

I started running last February as I wanted to get fit after having my two children. I started the ‘Couch to 5k’ on my phone. This developed into entering 10k races and a half marathon with my younger sister Louise. Then we decided we wanted a challenge as I was turning 40 this year and we entered the London marathon.

Running for Scope was a natural choice for us because our nephew Moss has cerebral palsy. Without being supported by Scope we really believe he would possibly be in a wheelchair, rather than having the strength and determination to walk with his crutches. Scope also offered my older sister Mell the support she needed when Moss was growing. We met other families who benefited from Scope’s service too and have family friends who have also greatly appreciated the service Scope provides.

I’ve loved training for the marathon with my sister and our friend Nina has been a huge part of it too. It’s been challenging and tiring at times but we have all pulled each other along. When my legs are stiff and tired at the end of a run I think of my nephew and this makes me more determined and motivated to carry on and more proud of him. He is one totally amazing person.

I’m really looking forward to marathon day and running for Scope. Although I’m feeling a little overwhelmed about how many people are going to be there! We really feel that Scope are an amazing charity and we’ve all been working hard to fundraise so that they can continue the great work they do.

Want to help Vicky, Louise and Nina reach their goal? Make a donation on their fundraising page.

If you fancy taking on a challenge, sign up for 2018 or check out some of our other events!

“We have a feeling that our family’s future is bright”

Aslam and Sadia live in London with their four daughters. They struggled to get the support they needed for their daughter Kinza after she was diagnosed with cerebral palsy. She went through many health problems and it was a very stressful time for the family. Aslam and Sadia turned to Scope for support and it turned things around, making them feel less isolated and stronger as a family. In this film and blog, they talk about why support is essential for disabled children to get the best start in life.

As my daughter, Kinza, was growing, we saw that she was not developing like other children. When she was six months old, we took her to a specialist. They told us that some children have a tendency to develop later and to wait until she was 9 months old. We waited but she was still the same so the specialist referred her for some tests and we found out that she had cerebral palsy.

Dealing with the diagnosis

The diagnosis made us feel very depressed. Kinza was our first daughter and we had plans in our mind about what it would be like. We took her to many places and specialists to get their advice. What were the options? Is there anything we can do for her? So many questions. Nobody could make any guarantees. We just had to wait and see. My wife was worried and she still asks me sometimes “What is going to happen?”

As she was getting older, we were finding it difficult to handle. We asked for advice about what you can do for this type of condition. They all spoke about physical things, but no-one talked about her mental development.

As life went on, Kinza started having a lot of health problems. It was a very difficult time for us. We didn’t know what was going to happen next. So many things were going through our mind and we were really upset.

We got in touch with Scope because I was struggling

We were given a number for Scope and a few other organisations. We called everyone. We couldn’t find help from those organisations but we found help from Scope. It was a great experience. We discussed our problems and got some advice and we started to feel better. Before that, we were alone and nobody was helping.

Without Scope’s support, we don’t know what we would have done. We’d be struggling more and maybe getting worse. The emotional support that they have given us has been fantastic. We’re feeling much better compared to previous days and we have a lot more strength now.

Without Scope, we wouldn’t have achieved everything so far for Kinza, which is a lot. She’s in less pain now, she’s concentrating, she makes noises to communicate. She feels happy, she laughs.

A man and woman smile with their disabled daughter who is a wheelchair user

The future is looking bright

Hopefully, we will reach that point where Kinza will be totally independent. At this point, Kinza will be happy and we will be happy. After coming out of these difficult times, we have a feeling that our future, especially for our kids is bright, they will get good education and succeed in life.

The most important thing is that you never lose hope. If you have hope, then you can achieve everything. Don’t be isolated and try and find the support you need.

At Scope, we work to change society so that disabled people have the same opportunities as everyone else. There are 13 million disabled people in the UK today and life is still too hard for too many.

Our new strategy has been developed with disabled people and their families and sets out how we want to make this country a better place and drive positive, lasting change.

We’ll support parents of disabled children get the support they need, so that all children can succeed at school and get the education they want. We’ll work to make sure that disabled young people are supported as they move in to adult life, whatever they want to do.

Visit our website to find out more about our new strategy.

“Everyone deserves to live a life of dignity”

Ricky is currently studying for a Masters degree in the Theory and Practice of Human Rights. In this blog he describes his experience of living independently while at university.

I worried about the support I’d get at university

As I did my A levels, I was encouraged to go to university and I knew I wanted to carry on studying. I’ve always had a passion for politics and I wanted to take it further. My concerns were that I had never been in a mainstream environment. I had always been to specialised schools and colleges before that point.

I didn’t know what to expect and how other non-disabled people learnt as, obviously, being blind means that you can’t learn in the usual visual way of learning. I was also worried about the support I’d be able to get in relation to my care and social support. It was always there in school and college, I just didn’t know what was going to be there for me.

I could be left in my room for 24 hours at a time

Originally, I had agency support for my care. I stayed with them for about a year and a half, then I went onto direct payments. I applied and got the maximum disabled students allowance DSA so I’ve always had academic support, people to take notes, scan my books and reading materials etc.

I really enjoyed the academic side of things and the academic department did everything they could for me. I don’t think they ever had a blind student before. Socially, academic support at Sussex was a total disaster in terms of being left in my room for 24 hours at a time. It really took its toll on me. I felt really lonely and I didn’t really get the student experience at undergraduate level.

My current support is so much better

I’m now at the University of Essex and I’m studying for an MA in the Theory and Practice of Human Rights. I have to say, the support is a lot better at my new university. There are some hiccups but overall, it’s going pretty well. The student support department actually really care about the students and they’re really on the ball, properly qualified and their expertise levels are a lot higher. They know what they’re doing.

I’ve been so well accommodated and I’m really grateful to my local authority for giving me those opportunities to live life as any other university student should. I have choice.

More hours means more independence

I’ve just had my support doubled to 41.5 hours a week. It has made such a tremendous difference to me. Previously, I only had just about enough support just to live, to survive. I could only have a daily meal cooked and have a sandwich made up for the following day. It also meant that I could only get washing and shopping done, there wasn’t any time for social activities.

The increase in hours has meant I can do so much more. I now don’t have to rely on carers to do things for me out of their good will as a friend. I now have people coming in twice or sometimes even three times a day. I have a great team and they support me to do so many things.

Two men share a coffee in a cafe

Good social care is so important

Bad social care looks very bleak; staff not turning up, miscommunications, random staff turning up. There was one occasion where my mum had to drive down to Brighton because the agency had no one available and I would have been without food.

The alternative to agencies is direct payments. The only problem is that you have to advertise yourself for carers but once you establish a good network of people who can help you recruit it’s a really is a liberating experience to be able to employ people who have similar interests to you. When you’ve got a good team, it can work really well.

Having the right support is really good for my emotional wellbeing. As well as being able to survive, it allows me to socialise, take opportunities and explore avenues that are available to other people at university. It is so important to have good solid, reliable and enjoyable social care. Everyone deserves to live a life of dignity, autonomy and to be themselves no matter what.

At Scope, we work to change society so that disabled people have the same opportunities as everyone else. There are 13 million disabled people in the UK today and life is still too hard for too many.

Our new strategy has been developed with disabled people and their families and sets out how we want to make this country a better place and drive positive, lasting change.

We want all disabled people to be able to live the life they choose. That’s why we are focusing on making living independently a reality. From campaigning for better social care to providing information, advice and support, we’ll fight to make independence and choice a reality for many more disabled people.

Visit our website to find out more about our new strategy.