I went to a panel discussion at the Wellcome Collection in late 2019 that discussed ‘The Trouble with Charity’. One of the topics of conversation was that disabled people are often seen as recipients of charity, a view compounded by campaigns like Children in Need that tugs at heartstrings to encourage donations. We all know these videos – where poor, sad disabled people need your money to get better equipment or more opportunities.

Most of us will have mainly seen disabled people on screen, or in any media coverage, in these kinds of positions – as beneficiaries of benevolence. Being talked for by non-disabled helpers or being grateful for the charity they have received. The panel discussed how much airtime is given to parents of disabled people, rather than disabled people themselves, and how this reinforces a sense that disabled people cannot talk, advocate, for themselves.

I asked a question to the panel about how parents should approach this issue and the disabled speakers answered thoughtfully but clearly – that parents should not talk for or over disabled people. They shouldn’t take up space in which disabled people could advocate for themselves. 

I feel like my work at the moment is at the heart of this conundrum. I am a non-disabled person who talks about disability, and I could be taking up airtime or attention that would otherwise be occupied by a disabled person. 

But I am also a non-disabled person who unexpectedly became the parent of a disabled child, and the last eleven years of being Ben’s mum have given me a rapid education. Up until his birth I had a probably-typical understanding of disability, which is to say very limited, and I found many aspects intimidating or incomprehensible. Now, I don’t. A lot of my insight has come from being close to and raising Ben, but most has come from listening to disabled people. This took time and I can now see there is an inevitable gap between new parents, who know little about disability, don’t know where to look for information and are worried, and disabled communicators who could help. 

The challenge of being a new parent coupled with the responsibility for a disabled, in my case complex, child means the early years are often very muddled. I found it very difficult to separate which of my concerns were to do with being a parent for the first time (a colossal responsibility and profoundly discombobulating for anyone), and which were to do with Ben being disabled. I wonder whether I could have more quickly come to realise that Ben’s disability didn’t mean our lives would be sad and small, and found the disabled people and their families who were living lives that we could aspire to. 

I think in the early years the gulf between my little baby and a disabled adult, however content, was just too large. I wasn’t ready to anticipate my boy growing up, but I was hungry for stories from other families and to see other parents living lives similar to ours. Through those families, I gradually came to see that there was a whole world of diverse disabled people living lives that were good and true, if sometimes challenging.

All parents are thrown in at the deep end, despite being surrounded by advice and people in similar situations. No parent does everything perfectly. New parents of disabled children generally have even more to contend with, yet are less likely to find themselves represented when they look around. They may depend on their experience of disability so far – the campaigns they have seen fundraising for needy adults, the limited exposure they have had to people needing help to access places and services. I couldn’t work out where our family fitted in for a long time.

It took me a long time to realise that Ben’s challenges weren’t only ours to face. They felt individual and specific, but they actually fit into a collective experience of being a disabled person. A lot of Ben’s difficulties are about how he is treated rather than how his body works. The power of disabled adults will become his power as he grows. I am more observant of whose voices are being centred. 

As Ben’s mother I will always have a different experience of the world to him. I can be his carer, advocate and ally but I am (currently) not disabled. Yet I am his mother and that is itself a particular and specific role, for me as an individual and as a collective. I think talking about my experience is valid and there should be space to do it, as long as it is done carefully. The challenge of talking about mothering while not oversharing is not unique to me – it’s true for all mothers, of all children. The reason we share is because we are trying to work out what we are doing and who we are. I want to attempt to articulate what I have learnt because I’d like to help reduce the number of people who, like me, had no idea. I hope that is what I have done in my book, which is published in seven weeks (argh!), and I am excited and terrified for people to read it.