I’ve always had feelings, from a young age, of being lonely and cut off from the world.
Being a full-time wheelchair user with a disability, osteogenesis imperfecta, means I’ve spent considerable time in hospital, missing out on school and interacting with my peers.
My parents were understandably ‘overprotective’, not allowing me to go and play with friends or be invited to sleepovers. I was excluded from lessons because classrooms were inaccessible, or sports hadn’t been differentiated to allow me to participate. Often I was simply told that I couldn’t or shouldn’t do certain things.
For disabled people, feeling ostracised from society comes from a number of factors including emotional loneliness as a result of discrimination, prejudice and internalised ablism, social isolation deriving from attitudinal and physical barriers, and the impact of austerity.
Now shocking new research by Mencap has found that fear of being bullied is leading to social isolation for people with a learning disability. More than one in three people with a learning disability said that being bullied is one of the things they worry about when they go out.
In a survey of 1000 adults with a learning disability, they also shared their fears about getting lost and using public transport.
It is this fear and worry that means people with a learning disability feel reluctant to leave their homes, to attend hospital visits or enjoy social activities. Worryingly, over two-thirds of people with a learning disability said they didn’t have anyone to spend time with either some of or a lot of the time.
Far from a wallflower, I’d describe myself as a cheeky northern lass, not scared of being ‘bolshy’ and a true extrovert. I have always been able to speak my mind and challenge others.
This innate confidence has largely been my saving grace as I’ve always felt somewhat an outsider and different to others – I would almost force myself upon people, making sure I was the centre of attention, be dramatic, articulate, funny and assertive, meaning those around me would have no choice other than to listen to me and include me in their lives.
Despite this, I’ve still felt so lonely at times it has triggered spouts of depression and anxiety. These feelings are shared by 24-year-old Michelle Ornstein, who has learning disabilities.
‘Growing up with anxiety has been a very big part of my life. Anxiety would build up about not knowing my way around, which would just make me go into my little shell and not open up. There were lots of places I felt I couldn’t get to,’ she told me.
In response to this issue, Mencap is launching a series of inclusive sporting events during Learning Disability Week 2019, which brings people with and without a learning disability together through sport to tackle discrimination and stigma. We know it works.
‘Everything changed when I joined my local Mencap group to take part in sporting activities with other people with a learning disability,’ says Vijay Patel. ‘It helped me go from low confidence to high confidence and has given me the believe in myself that I can do it.’
And while Mencap’s initiative is positive, the responsibility to end isolation among the disabled community should not rest solely on the organisation’s shoulders. This form of discrimination is not inevitable and there are many ways in which the government and society can be more inclusive.
Having spoken to Michelle we both agreed that a better care package or funding towards a personal assistant and carers via the direct payment scheme which gives us the tools to maintain our independence is vital – although with cuts to independent living fund across many local authorities it’s unlikely that those like Michelle and myself will receive more help towards care anytime soon.
First and foremost, however, understanding towards disability across the board is paramount for combatting social exclusion.
The ability to maintain our independence, and thus build our confidence, not only tackles feelings of isolation but the feelings of anxiety that so many of us, disabled or otherwise, can relate to.