Carers Week & Learning Disability Awareness Week 2021
“As a sibling carer, I have often felt invisible. Not to my family, who have always valued the role I play, or to my friends who recognise the highs and lows I have, and continue to work through in supporting my brother. Society though can often overlook us as a caring group. We sometimes get lost in wider definitions, such as young carers, or simply adult carers, yet the role of sibling carer is very unique and usually a life-long one.
My brother Matthew and I are very close, as are many siblings, but with us, the bond is one of advocacy, challenge and support at a level that is often not felt in most sibling relationships. I am often an advocate and champion for him when he is unable to speak up for himself – or chooses not to. Equally, the way that he has overcome challenges he’s faced, pushes me to consider how I can achieve more and overcome barriers of my own. It’s a symbiotic relationship of equals, even though society often pitches us as very different in our abilities.
As Carers Week comes to close, we at the All Wales Forum, alongside our Carer organisation partners, have shared stories about making carers more visible within society. It is our hope that as we start to recover from the impact of the COVID pandemic, we not only see more of our amazing unpaid carers being supported to reconnect with society, but also key groups such as Siblings, being recognised more in their own right. For me, I’ll be looking forward to spending more face to face time with my brother after a year where we have been mostly kept apart. The challenges continue to ensure he is not left behind in re-engaging with his community, and that I too, am supported to feel valued as his sibling and a family carer.”
I think this piece should start with her, my buddy, my friend.
I met Moira when I was still deep into my degree. We met at my workplace, she was a customer, walked up to me, said a shy “hello” and then demanded to try on my glasses. Moira hasn’t left my life since. She supported me through my final year, made me laugh when I felt homesick, teased me when I spilt something on myself and got me back into writing letters.
Independent, proud, smart, cheeky, funny, stubborn, kind as no other I have met. Nothing passes her, I can’t even try to fake I’m OK or hide my feelings, she knows. She has a way of talking to me that is so honest, empathetic and straight to the point that it disarms me and yet accepts me. Never passing judgement.
Moving away was hard on both of us, we had an established routine, as best friends do, but we worked it out and years later we still have our phone calls, and a long overdue meal that we have both been patiently waiting for.
She’s one of the best friends I could have ever asked for and she just so happens to have a learning disability.
When we became friends, I don’t think I realised just how uncommon our dynamic was to the general public. People who hadn’t met Moira before, would talk to me rather than her, some would go up to her when she was waiting for me (as usual, I like to take my time in charity shops and she’s a busy-bod, match made in heaven!) and ask her if she was ok and if she was on her own.
She would politely reply that she was fine and that she could take care of herself, but it always rattled her. I’ll never forget her saying: “I have a boyfriend, I work, I volunteer, I’ve lived here forever but people still treat me like that, why can’t I just be hanging around with friends”.
Fast-forward a couple of years, I’m sat in a room for a self-advocacy training for people with a learning disability. My dear colleague who I was there to support, had just successfully delivered the first part of the training and was now inviting all the self-advocates to think of how their life would be if the Convention on the Rights of Persons with Disabilities was respected and applied.
A woman offers to go first and with her supporter she takes the floor. In her native language she tells us about her relationship with her sister, her supporter, her best friend who is translating for her and by doing so is empowering her to have a voice in this room. She tells us about how much she wants to be married and have a child, just like her sister. How much she wants to have her own house and become a mother. How small her future looks to her. I look at her sibling carer, who is trying her best to translate and not get emotional, who is struggling to get the words out and I am moved to tears by the bond that these sisters have built.
Article 23 of the CRPD “Respect for home and the family” recognises these sisters to have the same possibilities and opportunities.
“The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized”
It is most certainly recognised in law, but is it applied in society?
That’s a harder question to answer. We are seeing more and more fantastic services and projects that champion inclusion in this aspect, services such as Luv2meetU, Supported Loving and Gig Buddies and many more local initiatives (charities, families, advocacy groups) around Wales have held events in the past and now have moved their activities online to keep supporting friendships and relationships.
But are things changing? It was only 30 years ago that the UK started closing its institutions. The last long stay hospital for people with a learning disability in Wales officially closed in 2016.
I highly recommend watching the short film ‘A Hidden Portrait’ by Paul Hunt about a man who lived most of his life within institutions and an artist who worked as a nurse that painted his portrait. (Copyright – It’s My Shout 2017) A Hidden Portrait
The “Hidden Now Heard” project, was a six-year long Heritage Lottery Funded oral-history project created solely to record the stories of people with a learning disability who had been living at these hospitals. A project to make sure this painful, precious, important piece of history and all the people who were a part of it were not forgotten. Stories of long-life friends separated once the institution was closed, never to see each other again, stories of families who had never met their sibling because they had been locked away. Stories of relationships and friendships. To listen to the stories, please click here.
In 2019, I was lucky enough to join the project that followed this first Wales wide project of its kind. “Our Social Networks”, was an oral-history project that collected stories from people with a learning disability about their friendships and relationships. Click here to hear their stories.
I learnt about the power of oral-history and how accessible of a tool it is. I heard about how complicated something as simple as maintaining a friendship can be when there are challenges to your independence. I was appalled to hear about couples who had to jump through hoops and had justify themselves for wanting intimacy. I was moved to hear about the families who despite the fears were ready to challenge themselves and others for their loved one.
I thought of Moira a lot during that project. I thought of her independence, of her life and her routine, of how important it must be for her independence, as well as her working opportunities, to have her friendships and the relationship with her partner. What, if anything, had empowered her in her life to build these circles? I decided to talk to her about it next time I saw her. Maybe it was something that could work for someone else. Maybe it was something we could all learn from.
After a long chat about the projects, the history of people with a learning disability I finally asked if there was anything that had empowered her to build the life she had. Her answer? “My sister. She challenged everyone when I wasn’t given the same things as her.”
A sister, a sibling, a peer, a friend.
Someone who could fight for them to be equal in anything, because if I can, why can’t they?
I realised even more the importance of how a relationship with a peer can encourage, support and empower. I thought of the two sisters at the self-advocacy training, fighting together so they have the same possibilities and opportunities.
But how does it differ from the support and love a parent has for to their child? I asked a parent carer whom I have known for a long time.
Their answer: “Her brother challenges her in a different way, she can’t build that comradery with me. I won’t be getting in trouble with her anytime soon, you know”
“Trouble”, that word shot through my memories, suddenly I can hear my own mother telling me off for getting my siblings in trouble and years later one of my siblings telling me how much they loved getting in trouble and how it builds their confidence.
I remember the laughs, the giggles, the fights, the tears, the emulation, the sharing, the deep understanding that we had of each other and the beauty and complexity of that relationship. How having all that interaction with them probably made me the friend, partner and person I am today. My siblings.
At the All Wales Forum of Parents and Carers of People with Learning Disabilities, Sibling Carers have always been recognised to play an important and unique role in the life of their siblings with a learning disability. They offer support in countless ways; from daily tasks to physical assistance to emotional well-being and they must manage this alongside their own development and growth as individuals. Sibs Matter Cymru
Only in the last year have I had the pleasure to work closely with carers of people with a learning disability and I don’t think I will ever stop being in awe of this incredible group of people. Families who wear multiple hats to ensure their loved ones are happy and enjoy a good quality of life.
Today, with this piece I learn, and I recognise one more hat sibling carers wear. One more unique way this group of carers can support and empower their siblings with a learning disability, by supporting them in their friendships and relationships as only a peer could do.
And so, one more way we can support people with a learning disability in their relationships, by supporting their siblings support them.
Network & Communication Officer