If we asked you to name the top three most important things in your life we are pretty sure that one of them would include your family, your lover, your friends and the relationships that you have. Here at Erya, we feel it makes sense that the thing that most people want and need in their lives is love, friendship and companionship. Yet somehow, people who live with the label of learning disability, are often prevented from achieving this fundamental Human Right and need.
Serviceland, the land where support services reign, have worked really hard to give people person centred services, ensuring people live in communities and not in large institutions constantly surrounded by paid support - yet people still tell us they are lonely. People join groups, evening classes, walking clubs - yet people still tell us they are lonely. Why is this? Is it because people are prevented from forming meaningful relationships by staff, family or friends? Is it because people don’t have the skills or confidence to try new things, to ask people out on a date or sometimes know how to act on a date? What about your first date? Mine was that intoxicating mixture of excitement and nervousness. I talked to my friends about it beforehand and after, I planned my outfit and we discussed where we would meet. Who knew what time I would be back but if it was a good date I would be late! What would not be happening is that I would have a chaperone (as much as my father probably would have liked it), that I was told not to hold hands, that I had to leave by 8pm as that’s when the ‘chaperones’ shift finished – you get the picture. And it’s one that we have been told again and again. So, the question we need to start asking is how are people supported to make friendships and real connections, because although there are some great organisations that do this, there are others that don’t. How can we encourage organisations and their staff to support people to have meaningful relationships, to build confidence and to live the life they choose with the people they want?
We do train staff in health and safety, safeguarding (don’t get us started!), food hygiene, which we can all acknowledge is relevant and important learning, but where is the training on how to support people to find, build and maintain relationships? We challenge you to ask the people you support and then ask yourself the same question ‘what is more important to you - is it’;
· being safeguarded or being in love?
· being risk assessed or having friends?
· having food at the right temperature or fun, activities which creates a real sense of self-worth and belonging?
I know what my answer would be and its one of the reason we formed Erya (its Cornish for challenge and we are a feisty group that champion peoples’ right to live the life they choose).
One of the things we feel passionately about is our Matching to…service. Our tentative approach (we don’t want to let people down and there is a real lack of women accessing services so that is holding us up somewhat) has seen us begin to form, with people (who access services, families and even some staff) shouting really loudly in our ears, a matching service which aims to match people to love, friendship and life. It is not an easy task and a piece of work that will need to evolve with the people who join the service. The other challenge is that it is a service which people don’t understand - if we had a pound for every organisation that used the word ‘safeguarding’ or whispered ‘what if people had sex?’ we would have an all singing, all dancing fully funded service!
We want to offer a service that supports people to meet, make friends, have fun, be grown-ups and experience the highs and lows of glorious, infuriating, messed up relationships which is something we all probably take for granted but still moan about. Also, while we’re it, let’s talk about sex and not hide away from the conversation as surely this is more dangerous than not talking about it?
As you can probably tell, here at Erya we sometimes get carried away and get a bit ‘giddy’ (it’s officially our favourite new word) with the potential of Erya and at other times we wonder how on earth we can make all this happen on a shoe string budget. What keeps us going are our Peer Advocates and Educators who support us, guide us and who ALWAYS make us remember how lucky we are to work in the role that we do – failure simply isn’t an option! Kevin, one of the aforementioned Peer Advocates and Educators and general all round general knowledge guru epitomises everything that our Matching to… service aspires to achieve.
“My relationship with Sharon means everything to me. Before I met her through Erya I had nothing. It’s a full on relationship; we have a normal intimate relationship, she’s my rock. ….Previously when I had relationships they were controlled by families or staff – there was no intimacy. I was even told by staff that holding hands and cuddling is inappropriate but when you’re in love holding hands is totally appropriate.”
Oh, how things have changed for both Kevin and Sharon! They are both the first to admit they drive each other bonkers but they are happy. They are in love and they have each other when times are good and when they are bad – who doesn’t want that?*
So come on, let’s start challenging why people with a learning disability aren’t supported or encouraged to have relationships, to take risks and to make friends. Lets’ talk about sex and lets’ not forget that communities are not about physical places but are made up of a rich tapestry of people, who for the most part, probably want the same things - to belong, to be loved and to be happy so lets’ do it together.
*We haven’t ruled out buying a new hat…
Samantha Barnett
Erya Community Interest Company
Director