My name’s Ellen Watson. I’m 22 years old. I’m a student at the University of Sheffield. I recently attended parliament where I spoke about loneliness and disability. I shared my experience of being deaf and losing my sight, and the effect it has on young disabled people transitioning from childhood to adulthood.
Loneliness and isolation among disabled people
I happen to be disabled. I have a condition called Usher Syndrome, which means I was born deaf, and then aged 16, began to lose my sight. I’m registered blind. My vision is a little like looking through a blurry biro pen.
I say I’m disabled as if it’s an add-on, and that’s because it is. Disability is way down the list of my defining features: I love politics, I’m partial to a bit of rubbish telly, I love cooking, music and, like most 22 year olds, enjoy going out with friends and having a cocktail (or three)!
It’s likely I have something in common with you. No doubt if you took the time to get to know me, you’d find I have a lot to say and contribute. Unfortunately, though, there are barriers that prevent many disabled people from participating in society and having those conversations.
In order to include disabled people, we need to change how we perceive loneliness and isolation. These terms don’t just mean being sat at home alone, or purposefully left out of plans. Loneliness and isolation also come from being unable to participate in society, as your peers do, from watching others progress, explore and experience whilst your life remains as it always has.
No matter how many social occasions are marked in your calendar, being unable to embrace opportunities and move forward, can leave disabled people feeling distant, allowing loneliness and isolation to encroach.
I first experienced loneliness and isolation when I was 16 and had lost the majority of my sight. At 16, having the independence to hang out with your friends feels like the most important important thing in the world, and I felt like my freedom had been stripped from me overnight.
While my friends were learning to drive, travelling to festivals and going on holidays, actively gaining more mobility, mine was being taken from me. I couldn’t get from A to B, without someone to guide me. Even if somebody accompanied me to a party, or occasion or event, I found myself struggling to communicate. I could no longer lip-read or follow facial expressions, it was easier all round if I refused the invitations. After a while, the invitations stopped coming. Instead, I sat at home and jealously followed the life of my peers through Facebook. What was most devastating, was realising my friends could move on in life without me. The disabled me had no purpose, I had nothing to contribute. In the months that followed my diagnosis, I became lonely and depressed.
Incredible support helped me regain my purpose
Fortunately for me, I had access to fantastic support. At school, I had two brilliant support workers or Teaching Assistant (TA), who were with me from 8.30 to 3pm every day. They helped me through the grief, and encouraged me to re-harness the friendships I had before.
I had rehabilitation support from the low vision clinic at my local hospital. I had help from an incredible mobility officer from social care services. She taught me to cook and clean without sight. Most importantly, she taught me first to use a cane and then a guide dog. She showed my friends and family how to guide me, giving both me and them the confidence to start getting back to normality. It was gradual process, but with coherent, coordinated support. I regained my confidence, and began interacting with my friends again, I realised I did have a place, that my friends and family needed and wanted me around. I regained my purpose.
That was my first transition- from able-bodied to disabled. The loneliness I experienced was heartbreaking but short-lived. Because the services stepped up like they should. A model example, of supporting somebody who acquires a disability.
The transition from childhood to adulthood was a challenge
But the next transition, from childhood to adulthood, proved to me that provision cannot be limited to the point of diagnosis. The beginning of adulthood is one of the most turbulent in anybody’s life, regardless of disability, and it is here that young adults need critical support to make the transition to adult-life in an able-bodied world, without being left behind.
When I finished school, I got into University. The confidence I’d gained from all the support I outlined, gave me the courage to accept an offer in Sheffield, 200 miles from home. What I didn’t comprehend at the time, was that all the support – the amazing TAs, the pastoral support, the mobility support – that whole network was going to end.
I went from a professional circle of people I could trust, to none. My university offered some limited support. This meant I was able to get from A to B, to lectures and seminars, but beyond there was little I could participate in. In halls, I made some great friends. I hated the idea of being a burden on them, but when they were doing something like volunteering or joining a society, I could go along with them and they’d give me communication support or guide me. But I began to feel that lack of self-worth again, the feeling I don’t have anything to contribute to, or participate in… and that of course, leads to loneliness.
My experience is not unusual. 85% of young disabled people aged 18-34 have experienced loneliness. A friend of mine, whose brother Jack has autism, explained to me how when he was young, Jack had access to a community supporting his mum’s friends, and their children. They played together at nursery and primary school, went to coffee mornings and birthday parties together. It was when the other children grew up and reached their teens, that they began to taper away.
When they reached adulthood, Jack’s childhood friends began to broaden their horizons, form new relationships, go travelling, go to university, begin prosperous careers, get married… and Jack was stuck at home with his mum. While all these people he associated himself with had moved on, he was left with no purpose, nothing to contribute to. That’s when he became lonely.
I think what needs to be understood, is that combatting loneliness does not only mean providing ways for disabled people to talk with other people. I’m not dismissing these kinds of schemes, but the response needs to be more nuanced than this. I, for one, would not have been helped by going to coffee mornings or something similar. Jack told me he wouldn’t be either. One of the key aspects of loneliness, is feeling like you don’t have a purpose – nobody needs your help, nobody needs to talk to you.
To combat loneliness, you need to ensure disabled people can access and contribute to society in a variety of ways. Giving people a purpose is the key. Purpose will mean different things for different people, but feeling like you’re contributing something, that’s what will not only bring people out of loneliness, but will enable them to sustain being sociable and happy.
To combat this, it’s crucial services work to facilitate and enable young disabled people to fulfil their purpose, whatever that may be. To ensure they can participate and contribute to society. Whether that be in employment, higher education, or volunteering.
Doing this starts with social care and those services supporting young disabled people to expand their horizons and break out of comfort zones. To go beyond their more limited childhood experience, whether that’s to travel further afield, use public transport for the first time, or communicate and interact with a broader section of society through mechanisms like volunteering. Social care needs to equip young disabled people to communicate and interact and contribute to encounter new experiences.
And then it’s a question of making sure society more broadly is equal and accessible for disabled people. There are two sides to this.
Firstly, there has to be a cultural change. The Jo Cox loneliness commission found 1 in 4 people will avoid conversations with disabled people. This impacts on all areas of interaction and participation for disabled people, from employment, volunteering opportunities or sitting next to somebody on a bus, to feeling like nobody wants to interact you will contribute to feeling like you don’t have a purpose.
Secondly, it’s about infrastructural change. Disabled people will not be able to participate and loneliness will never be combatted on a larger scale, unless society is physically accessible. This means accessible transport, buildings. It also means ensuring disabled people have the means to access society via disability or welfare benefits.
Ultimately change will not begin to happen, until all services across government examine the root cause of feeling lonely. It’s so important for everyone that we feel we have a purpose, self-worth and something to contribute to. Services must work to facilitate and enable disabled people to contribute all they can. It’s this that will bring an end to loneliness in disabled people.
Half of disabled people say they are lonely, and one in four feel lonely every day. Find out more about how Sense campaigns on loneliness, and how you can support us.