A few moments from my brother Tom’s childhood stick particularly uncomfortably in my adult mind. Like the time on a Cornish beach when he was wildly joyfully splashing about in the waves and a couple of older girls came over and pushed his head under the water and held it there. I remember seeing this from the beach and running towards him, the water like glue on my skinny eight-year-old legs. Their intention, it seemed unequivocal to me then, was to drown him. It was the first moment that I felt the importance of sibling advocacy.
What it’s like to have a sibling with learning disabilities
I tell this story in the interest of sharing the combined sense of passion and impotence that one can feel as the sibling of a learning disabled person. The broadcaster Jo Whiley remembers honing her “meanest stares” to keep the bullies away from her learning disabled sister as they rode the bus into town to buy records on a Saturday morning. To be the brother or sister of a learning disabled person, is to uniquely know the importance of advocacy. The word advocate — “a person who pleads for another” — has a rather cold, professional formality but advocacy is what we do. And as our parents reach the end of their lives, it’s down to the sibling to take care of their disabled siblings.
As Jo says, “I’m daunted by knowing and understanding the system that’s in place supporting Frances – doctors, healthcare, finances, benefits. That’s the kind of nitty gritty we’ll be dealing with when the time comes. It’s not something we have discussed, because I guess it is a conversation we don’t want to have.”
Whiley’s sister is like my brother, in that she lives in sheltered housing with other learning disabled people. “Frances won’t be wholly reliant on me, I am very lucky in that respect, but how will she react when there is no parents to go home to? It’s what she’s always been used to.”
How do learning disabled people fit into our world?
Tom is “severely” learning disabled. In practical terms it means that at 49 years old, he can lift a pint with the best of the big bellied grumpy old buggers in his favourite pub, and with an escort he can even ride a bike there. But he has never understood the value of the money in his pocket or been able to write much more than his name. His speech is difficult to understand and the Fragile X syndrome that is the cause of the limits to his intellectual development will also as he gets older impact more and more on his physical well-being. He needs support.
People with learning disabilities need help in a world designed for “normal” people’s success. A 2020 report by the Joseph Rowntree Foundation found nearly half of everyone in poverty is disabled or lives with a disabled person. In some Utopian other possible world, possibly Sweden, people with learning disabilities have rich full lives, their dreams and desires heard and enabled, their potential met. I could not care for him full-time and also make a living myself. We’re lucky in that the care he gets is more professional and better qualified than anything I could ever provide and it makes his life immeasurably better. Unless something truly devastating happens to our welfare state (and let’s not rule it out), it is unlikely I will ever have to be Tom’s full-time carer.
Fragile X syndrome in adults
Tom has spent his adult life in the care system and likely it will remain that way, and this would be by his choice I might add. Tom, broadly, enjoys his life and has a wonderful set-up with a small care provider in a small seaside town. Lynn Lockwood, the lady that manages his home, has known him for much of his adult life and is wonderful. She has his best interests at heart and has the bureaucratic skillset to make things happen for him. But what if Lynn wasn’t there any more, what if this angel who enables Tom’s good life was no longer there? Who would push and fight for his money and his rights on a daily basis?
When you have a learning disabled sibling, you cannot expect the care sector to do a great job. They might, or they might do an OK job, or they might do a bloody horrible job (see Winterbourne View and other horrific care home scandals). Still, I need to take a primer in state benefits, which is baffling. From the little I have already done for Tom within the social care system, I can tell you it is labyrinthine with many dead ends. Plenty of: “Sorry, she doesn’t work here any more”.
A good example of how Lynn’s support manifests is with the Covid-19 vaccine. She pushed to ensure my brother got it very early on, long before government guidelines stipulated. It helped that Tom has a sympathetic GP who makes all kinds of important allowances for Tom and his housemates. All of us who live, love or work with someone with a learning disability know that even before Covid, their mortality rates are already disproportionately high, and that they do not always get the best care in hospitals. Mencap, the biggest learning disability charity, lobby group and care provider in the UK called this Death by Indifference. This was glaringly obvious in the Covid death rates.
Sibling advocacy: How do we do it for disabled family members?
Wiley’s sister was not so lucky. Frances’s care provider — a good one — did not or could not push for that early jab, and her sister’s GP did not prioritise her. Jo was appalled when she was offered the vaccine before her vulnerable sister. Jo and I joined the Mencap campaign to get learning disabled people moved to the priority group. What a depressing irony that on the morning she was interviewed about this on the Today programme, she also discovered her sister had tested positive for the virus. We were both genned up on prophylactics that might help protect a person from serious illness: vitamin D supplementation and keeping an Oximeter to measure blood oxygen levels should infection occur — neither of which the care home had provided to Frances.
This is advocacy, a low-level plugging away, fretting over and pushing for the small stuff. My mum gets my brother regular magazines, she makes sure he has soft towels, she cajoles him into getting outside and gardening by buying him plants and gardening tools and myriad other things. One day I will have to sit down with our parents and write a big list of Tom Stuff.
Midlife: When we become advocates
I will always be Tom’s sister, but he needs something more from me than just love. Frances needs something more from Jo: They need advocacy, and in my midlife I am watching as this role passes from my parents and stepparents to me.
Advocacy is some really big picture stuff too. It is also running onto that beach with a rocket launcher and making some noise. The care system provides, we hope, for more than just a person’s basic needs. According to Maslow’s hierarchy these are from bottom up: physiological, safety, love and belonging, esteem and, at the top, self-actualisation. All along the way, I can nod to the ways in which the corner of the British social care system that has served Tom, even the tip, the apex of the hierarchy, of self actualisation, it has provided – somewhat – an ability for him to flourish.
There are some model — near Utopian — care set-ups for learning disabled people like Tom. I remember my Mum fighting to get him into one when he left full-time education in the late ’80s, and failing. The second best option proved wonderful in many ways, but some bad things did happen — in his twenties on some basic levels he wasn’t even physiologically cared for properly. His toenails were too long, his ears full of wax, at times he was not safe from a sexual predator. How did I miss this?
Whiley and I often compare the mealy-mouthed gratitude learning-disabled families can have when it comes to asking for things for our siblings. It’s real that gratitude. But also, we were taught that by our parents, and grandparents, who can remember a time when there wasn’t any promise of care, or indeed any welfare state at all, for the Toms and Frances in our communities.
“My parents are brilliant and seriously on it,” Jo says. “However, they come from an age when to be a family with a learning disabled child was to be quite powerless, and I don’t think they have that entitlement that we do to really be ambitious in their advocacy. I’ve got a louder, stronger and more empowered voice that can shout out certain situations and make change, not just accept things.”
Taking our brother on an adventure
Our family saw the power of that when my brother William and I raised the money needed to take Tom on an adventure to try and track down his hero, Lars Ulrich — founder member and drummer of Thrash metal legend Metallica, a man he talks and talks and talks about.
We went on a madcap road trip that broke Tom out of his cosseted world and really pushed him to the extremes of his ability, beyond perhaps what some people thought he was capable of. It was risky in many ways, but the consequences enriched Tom’s life. He gained confidence, he started using a phone, travelling alone and being way more confident with the wider “normal” community. I realised for Tom to have a full and happy life, he had to be pushed. And that isn’t something social care is designed to do.
I don’t kid myself I could ever replace the love and care of my parents, When they are gone, Tom and I will grieve the loss of that unequaled love. But we will have each other, and having a grasp of the technical small stuff and the ambitious big stuff will be my duty to him. I am not a saintly sibling, far from it. My brother Will and sister Amy provide him with far more fun than I do. But if I had had a gun then, on that beach, aged eight, I would have shot those two brutes and I can’t say the intervening four decades have lessened my fury. Tom needs love and he needs a fearless fighter. Increasingly, with age, I wonder if I am fit to take on that role.
What the experts say
Edel Harris, Chief Executive of Mencap:
“People with a learning disability can lead independent lives when they have the right support. Most adults with a learning disability will outlive their parents who in many cases will have been their primary advocate or carer. Siblings can be expected to take on additional responsibilities which can bring significant challenges.”
Clare Kassa, Chief Executive of Sibs:
“Our journeys as siblings evolve. There’s something we call the ticking timebomb effect, that there will be a crisis point in adulthood when the parent might be old and frail, or dies, and we will have to step up. Siblings can be sent full pelt into roles that had previously been tightly controlled by parents. We need to see planning taking place earlier.”
Resources for siblings advocates
- https://www.sibs.org.uk/support-for-adult-siblings/guides/ (guides around planning, care and mental capacity)
- https://www.sibs.org.uk/support-for-adult-siblings/online-support-sessions-lde/ (access to online sessions about things such as advocacy and mental capacity)