The Complexity of Sharing

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. 

A New Standing Frame

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Ben needs a new standing frame. He stands most days – he is unable to stand on his own so the standing frame provides enough support to keep him upright.

On a busy day Ben can spend up to 10 hours a day in his wheelchair. He ‘tolerates’ sitting in a chair really well, He’s happy being able to see around him and his chairs are comfortable and supportive enough for him to be content to spend hours in them, but it’s a long time for his body to be in one position and over a lifetime sitting this much can lead to all sorts of problems.

There are lots of advantages to standing. Human bodies are designed to be upright and although Ben spends about 12 hours a night lying flat, it’s not the same stretch as standing straight. Bodies should ideally experience a variety of positions, and the digestive system benefits from him being upright. Also kids like Ben are at huge risk of their hips migrating out of their sockets and in the absence of daily walking, standing is a good way to bear weight on bones and joints.

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Ben first had a standing frame when he was almost one year old. At that stage he often hated it, and it felt more like a torture instrument than a helpful aid. These days Ben will happily spend an hour standing as long as he has good enough entertainment. The standing frame isn’t particularly elegant, and takes up a lot of room, but the benefits to Ben are worth having it available to him.

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A rep visited recently with a new kind of standing frame for Ben to try. There was normal amount of fiddling and adjusting, but once Ben was in the new standing frame he was happy and his physio was able to see that it worked.

At the end of the session we were asked what colour we wanted the new standing frame to be. Bear in mind that this is a standing frame that lives in Ben’s room, the room that was finished and decorated earlier this year. The room that I am desperately trying to keep as a boys bedroom rather than an equipment storage room.

Ben’s physio said we could have it in black, pink, orange or blue. Blue, I said. That will be best.

Then James said, ‘Um, shouldn’t Ben choose what colour he wants his standing frame to be?’.

Of course he bloody should! What was I thinking? I spend a reasonable amount of my time glowering at people who don’t talk to Ben directly, reminding everyone that just because he can’t talk doesn’t mean he doesn’t understand what people are saying. I tell people that he is a boy with views and preferences. What kind of ally am I?

Except… I have a history of manipulating my children’s choices. When Max is choosing between two tshirts and one is really ugly, I will unashamedly steer him towards the one that I don’t dislike. I haven’t allowed some things in Max and Molly’s bedroom because I don’t like them (e.g. massive garish posters).

I had a strong suspicion that given the choice Ben would choose to have an orange standing frame. Orange is his favourite colour. Let me explain that I have a mixed relationship with orange. It’s a hard colour to get right in my view. And the orange of this standing frame was more sickly, pasty colouring paper than cool, vibrant citrus fruit.

Fortunately for Ben he has hugely improved his ability to clearly communicate Yes and No over the last year. Last year it was often difficult to tell whether Ben was answering a question and we estimated that we clearly understood his yes and no maybe fifty percent of the time which is a bit tricky with a binary outcome. Now we would say that we get a clear yes/no about eighty percent of the time.

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So using his latest communication book I talked Ben through the options and asked him what colour he would like his standing frame to be:

Would you like a new blue standing frame, Ben?

No.

Would you like a black standing frame?

No.

Would you like a pink standing frame?

No.

Would you like your new standing frame to be orange?

Yes.

Obviously.

Totally cocking up my interior design aspirations.

Thanks Ben.

Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Molly has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Molly love-in.

I started to feel a bit uncomfortable about it. How does Ben feel about Molly learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Molly does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Molly’s walking. Acting as if it was no big deal. Then Max asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Ben’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Max and Molly will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Ben can’t walk along walls like Max can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Max’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Ben won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Ben Likes. Each child is on their own track and we should only compare them against their progress on that track.

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Ben what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Molly – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

Let him shout (at Trump or anyone else)

In the dim and not-so-distant past when it seemed impossible Obama would be replaced by a misogynist as the President of the USA, I watched a video of someone protesting at a Trump rally. The internet was full of footage of protestors at Trump rallies, and inevitably Trump insulting the protestors, but this was different. Different because the protestor was a 12 year old boy, who has cerebral palsy, who uses a wheelchair, who talks using a communication device.

JJ Holmes lives in America and had been following election coverage by using his iPad to search for Trump events, typing the words in using his nose. He knew Trump had mocked disabled people and eventually convinced his mum to take him to a Trump rally so he could protest against him. She warned him it might get ugly but he wanted to go anyway.

He pre-programmed phrases into his computer before they went, so that at the rally he could shout slogans like ‘Trump mocks the disabled’ and ‘Dump Trump’. He could play the messages through his communication device by pressing a button with his leg (there’s a brilliant video of him using the button here. As it wasn’t that loud, his mother and sister chanted along so he couldn’t be drowned out too easily.

After a bit the supporters surrounding them turned rowdy. Trump heckled JJ from the stage and told security to ‘Get them out’, and they were jostled out amidst JJ’s wheelchair being shoved and some pretty horrible things being said to all three of them.

So…

I mean obviously there’s much to be depressed about in this little anecdote, and that’s before we even knew Trump would become President.

But out of the murk I find inspiration: a 12 year old disabled boy convinced his mother to take him to a political rally to protest Trump’s attitude toward disabled people! He programmed chants in to his communication device!

I can’t tell you how proud I would be to have raised a son who was so politically aware and knew the power of protest. A boy who knew he was disabled and knew that was okay. Who knew that Donald J Trump (as JJ refers to him) was wrong to belittle disabled people. Who was brave enough to go to an adult event and make himself heard. Who was willing to be heckled and shoved to make his point.

I would be so proud of my son for learning to communicate with his nose and his leg, and having the patience and determination to make himself heard.

I am filled with admiration for a mother who took her 12 year old seriously, and facilitated his protest even though she knew it could get ugly. Who told journalists, ‘He’s not some puppet I wheeled in there. This was him – this was all him.’ I would be proud to be such a staunch ally. To treat communicating through a device as equal to talking (or shouting). And to have raised a daughter who wants to protest too.

I’m proud of a world where disabled people are helped by technology and supported to communicate when they can’t speak.

What the whole story relies on is JJ’s ability to shout (even if his device’s voice output isn’t quite loud enough to be heard above enthusiastic Trump supporters).

Ben has been using his eye-gaze computer for some time now and is beginning to create messages or questions within his communication software, or he uses the computer to read himself stories. We try to give him as much autonomy over the computer as possible (whilst hovering around, interfering, facilitating and modelling) so he can choose what he wants to do. When he chooses to use it for communication, we take the messages he says seriously.

By ‘says’ I mean that as he selects words within the communication software, they go in to a window at the top of the screen. When Ben goes to the ‘speak’ cell the computer says all the words out loud. When he is reading himself a story he selects the ‘speak’ cell and a paragraph of, for example, Mr Stink by David Walliams, will be read aloud by the computer.

But the loudest volume of Ben’s computer isn’t that loud. He can hear it as he is quite close, but you can’t really hear it if you are across the room, and you definitely can’t hear it if Max or Molly are squawking. So Ben’s speech and language therapist recently gave us a speaker to sit on top of the laptop, the volume of which can be controlled within the communication software. It can be turned up really loud, because if you are going to give an AAC user the opportunity to communicate as a neurotypical child would, you need to give them the ability to SHOUT if they want to. Or whisper. Or somewhere inbetween. Ben should be able to compete in volume with his siblings even if it’s not something I particularly relish the thought of.

In the same way that I ask Max many, many times a day to please not shout, Ben should be able to be loud and annoying. There is a temptation to think of children like Ben as ‘good’ because they are relatively quiet and controllable, but part of being a child (any child) is being disruptive and protesting and Ben should have as many opportunities to do that as he has to be compliant. If we get to the point of Ben purposefully turning up the volume of his computer and shouting at us all, and me having to tell him to turn it down, that will be a good problem to have.

Meanwhile, JJ’s recovery from the Trump rally ordeal was helped by him meeting Obama the following day who was every bit as friendly as you would expect, crouching to his level, listening to JJ’s messages and shaking his hand.

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(Holmes family photo taken from Washington Post website)

According to a Clinton official, when he was told he was about to meet Obama,  ‘JJ jumps out of his seat and erupts into cheer . . . his smile almost bursting out of his face. His body overcome by light, when just the day before it almost succumbed to hate.’

Let’s keep heading toward the light, people. Let’s confront bullies and prejudice. Let’s give all our kids the ability to communicate, to shout and to protest. Let’s take them seriously and hope that one day we might meet Obama.

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