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 Parent Perspective: Interview with Alex

My son, Ben, is about to turn 11 and my approach to his disability has changed a lot since he was little. I am interested by how and when this happened. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently, but I was just doing my best with what I knew at the time. I think I would have found it helpful at the beginning to have read stories of other parents with similar experiences and so I am starting a series of interviews with parents who are raising children who are not typical. We will discuss parenting, language and expectations. This week it is with Alex, who kindly joined me for a walk in the pouring rain to answer some questions.

Could you describe your family?

I’m Alex. I have a husband and two children – Betty who is 11 and has complex needs, and Agnes who is nearly nine who doesn’t have complex needs. And a dog – a recent addition to our family!

What does Betty love doing?

She really loves singing and listening to music. Swimming and being in water. She likes being with people that she knows, though she struggles to know how to interact with them so that can be tricky. She loves Ben (Jess’s son), and his speaker! And bubbles. 

How would you describe Betty? Would you say she was disabled?

Betty has some physical delay and she looks different and so sometimes I describe her as disabled and sometimes I say she has special needs. I think I refer to her having special needs more to do with behaviour, and say disabled more for her access needs. I remember when she was born and a nurse was talking about her having complex needs and I was really confused. I asked, ‘Oh, has my child got special needs?’ and she said yes. I didn’t know what the terminology meant. But now I use both.

When did you realise Betty was going to be different or disabled?

I was referred for tests during my pregnancy which showed she would have a rare genetic condition that nobody else has so we didn’t know what it would mean for her. As soon as she was born she wasn’t breathing, she was very still and didn’t cry at all for the first few days. She was floppy and couldn’t feed so there were immediate challenges straight away but the magnitude of it didn’t hit me until later.

How does Betty’s disability affect her day-to-day life?

It affects everything to do with her day-to-day life. Her genetic condition has affected her physical and mental development. As she’s got older she’s been diagnosed with ASD and ADHD, eye problems, scoliosis.

When she was a baby everything was focussed on her fine and gross motor skills, like sitting up and holding things. Initially it was all about endlessly grasping toys and trying to get her to stand. We had loads of equipment – a walker, a standing frame, a special chair, a wheelchair and all that. Then things moved on to her speech and language. Now our focus is on her behaviour because she’s very anxious and she gets very frustrated and which manifests itself as quite difficult behaviour. Now we have less equipment but her needs impact our family every day and she needs care all the time, in everything we do.

In what ways is your life how you expected it to be and in what ways is it different?

I was trying to have a kid for years and I couldn’t so we had to have fourteen rounds of IVF and then egg donation, and I had two miscarriages as well. By the time I had Betty I was so thrilled, so thrilled, to have a child I think that overwhelmed everything else. I couldn’t quite believe I’d got pregnant and had a baby. When she was really young I remember walking about in the rain one day and I was crying because I was so happy because I had a baby. Even though she was in hospital all the time and had to wear a helmet and actually it was quite difficult.

It’s maybe not what I thought it was going to be, but I don’t honestly know if I thought that far ahead because the pregnancies kept going wrong. Then once she was here I couldn’t think about the future too much because it’s too scary. 

We’re very fortunate, very lucky in lots of ways, but it can be difficult. When I was pregnant with her and I knew there was something wrong, I thought my life was going to be hard. Everything I read, everything I was told, was all about how bad it was. There was nothing positive. It was all about the challenges you’re going to face, all ‘disability is bad’ and ‘she won’t be able to do this’, nothing about the benefit of just having a child, whatever they’re like. Just hanging out with them. I thought my life would be miserable and it’s not. 

Is there anything that could have made the difficult bits easier?

There’s been plenty of people that have been incredibly insensitive. The first few years were difficult because I was in it and learning everything. Every report and every doctor that we saw told us what she was not doing, or what was wrong. People would say things like ‘I don’t think she’ll go to mainstream school’ but she was two! I’d think ‘Why can’t we just focus on now?’ I was lucky that when Betty was about one I found an amazing community nursery and that was really life changing. They were so kind and welcoming whereas other nurseries just didn’t want her because she was more work. 

I think it would have helped if services had been more joined up and we’d had more access to services when she was little. Everything is stretched and help is limited. It comes down to money and understanding from people

We had a really lovely nurse that came and gave me a list of all the things I could access, like conductive education, Disability Living Allowance, but unless someone tells you that information it’s quite impenetrable. I think one of the best pieces of advice I would give is try to find some other parents with kids that are different. That is the biggest help that I have had, and that is often where you find the best information. Just because my daughter has a different disability to your son, it’s the same experiences we’re having, even though they’re different kids. In the way their siblings deal with it, or we deal with it, or our families. A lot of it is practical stuff. I think finding people who understand is profoundly helpful. 

What would you change if you could?

I would make Betty’s challenges less difficult for her so she could have an easier time but all the things that affect me are things that could be changed. When the Olympics and Paralympics were on in 2012 we went to the Olympic village and it was so easy and brilliant. If things were more accessible and people were more understanding and a bit more appreciative of difference then it would be easier for everyone. 

What do you wish people knew about your family?

When Betty started to walk, when she was four or five with a walker, people would all go ‘oh look! She’s walking!’ like that was it. I could tick it off. People have the best intentions, but they cling on to these things, like walking, when she still now has problems with her gait. It’s more complicated than just learning to walk.

I’d like a bit more understanding that you’re not saying no to things or not doing things because you’re being difficult or don’t want to but because you can’t. I don’t want pity, but there’s a lot of planning you have to do just to get out the door, or go on holiday, or feed my child. It isn’t quite straightforward. Everything takes time. 

Sometimes you’re knackered because you’re up all night, so maybe be a bit less judgey and a bit less pity-face. We’re not brave soldiers because we’ve got disabled children. We’re just mothers. 

Betty is an 11 year old child. She has special needs but it’s not all she is. It’s just part of who she is. She’s a kid. She’s my daughter and she’s funny and she likes ABBA. She can’t do lots of things but that’s alright. I think sometimes you can end up defining everything by about what your child can’t do not what they can. Don’t pigeonhole her. 

How has your parenting, and your approach to your daughter’s disability, changed over time? How would you describe how you have changed?

I’m more relaxed about it but I’m armed with knowledge and experience and I don’t think I could have fast-tracked it. I was so worried at the beginning about targets and appointments – every week there would be something at the hospital, but I quite liked that. It was like a security net in some ways being surrounded by people who knew what they were talking about. I felt like I was doing something. 

We did endless exercises at home but it all became a bit about that, to the exclusion of anything else. I remember talking to somebody who had taken a standing frame for their kid on holiday with them and they were doing it by the pool and now I’d be like ‘You’re on holiday! Why don’t you just not do that?!’. But you get so caught up worrying that something bad is going to happen if your child doesn’t do so many hours in the standing frame. Now I think I could have done three times the amount of time in the standing frame with Betty and it wouldn’t have made any difference to her development. 

I think having my second child made me realise that. I did very little with her and one day she just got up and walked across the room! I hadn’t spent hours showing her what to do or buying her special shoes. I think in hindsight I would try and just enjoy having a child irrespective of the fact that they’ve got a disability. 

People see me as the parent of a child with a disability not just as a parent. Sometimes it’s quite nice if you meet people who don’t know and they just treat you like everyone else, not be weird about it or try and help, try to make it better. People want to help and that comes from a place of kindness but it’s exhausting when they’re trying to fix it for you and it doesn’t need fixing and it can’t be fixed. 

Agnes had to have a massive heart operation as soon as she was born and the heart problem could have been an indicator of a disability. I was a bit more like ‘well, it’ll be alright, it’s just heart surgery’ but also I was a bit less scared of it. I’m not scared of disability. 

I’m not very good at asking for help and just to acknowledge that it’s harder for me than it might be for somebody who hasn’t got a disabled child was quite difficult for me to do. I don’t want to be needy. I don’t want pity. I don’t want a sad face and a link to an article about gut health. But some people will just bring you a meal round if they know you’re struggling. Sometimes I just want a lasagna, or a beer!  

Having Betty has completely changed my whole view of everything. You see everything through the lens of having a child with difficulties and it’s made me not sweat the small stuff. But also be a bit more tolerant of some people and a bit less tolerant of others. I’m more understanding of people who are different. 

I’ve met some of the greatest, loveliest people through having Betty and it’s made me think about things differently. I’ve had experiences I never would have had and lived my life in a way I wouldn’t have lived it so I’m grateful for that. 

Note: Some names have been changed.

Getting Political About Education

Having three children at school has freed up time for me to usefully spend on admin and being angry. We have to submit an application for Ben to go to secondary school next year (How is he old enough? Where did my baby go? Etc. etc.) It’s a straightforward form where we express a preference and the Local Authority then processes applications, consults with schools, reviews Ben’s Education, Health and Care Plan (EHCP), and allocates a school to him. 

But of course it doesn’t feel straightforward at all, because all decisions about education are set against a bleak landscape of onerous budget constraints. 

We would like Ben to move to the secondary campus of the school he already goes to, but this will require our Local Authority to agree to him continuing his education ‘out of borough’. Judging by the experiences of our friends with children slightly older that Ben, they might push for him to stay ‘in borough’, which is cheaper largely because the transport costs are lower. We’ll see… 

What makes it anxiety provoking is that it’s hard to trust that decisions about Ben’s education will be made on the basis of what is best for him rather than on the basis of squeezed budgets. Spending on education has fallen, and the amount of money given to Local Authorities to fund schools has dropped, while the number of pupils needing extra support has increased. Of course it has, because if schools are stretched then they need formalised funding (an EHCP) instead of informally supporting children within the standard offer of schools.

Ben’s EHCP sets out what he needs to learn and it’s worked brilliantly for him. It opened the door to his current school which has supported him well. The process to get him into school initially was horrific, but let’s save that for another time. So the EHCP process can, and does, work for some and Ben has benefitted hugely from his EHCP setting out what he needs and then matching the funding accordingly. But past success is no guarantee of future provision. We don’t know if the Local Authority will agree to Ben staying at the school that he has thrived in and if they don’t then we will have the option to argue our case against the Local Authority in front of the Special Educational Needs and Disability Tribunal.

The introduction of EHCPs was meant to solve the issue of funding for pupils with special educational needs but of course it has not, and parents take their cases to tribunal every day either to get the support their child needs or to get an EHCP in the first place. They have a good chance of winning – 92% of the appeals decided last year were in favour of the child, family or young person. 92%! So Local Authorities know they are likely to lose but take families to tribunal anyway. It is estimated that Local Authorities spent £40m spend in 2018/19 on SEND tribunals. By all accounts, going to tribunal is hugely stressful and expensive (if you can afford a lawyer) and the child or young person is left waiting for support.

Families are going to tribunal because it is the only way to get what their child needs in a system where there is almost no extra capacity. The number of pupils in special schools has increased, but mainstream schools are still trying to support pupils with special educational needs and insufficient funding. As the head of Max and Molly’s school told us, ‘A recent survey of 600 Headteachers showed that 94% found it harder to resource SEND than two years ago and only 2% felt top up funding was sufficient to meet Education Health and Care Plans.’ This kind of funding shortfall inevitably results in children not being taught as well as they could be, and those who could manage in mainstream schools with the right support moving to more specialist provision where they will. Which is a kind of segregation.

The effect of this creaking system on children and their families is awful but obvious. But even if you, like us, are lucky enough for your children to be in good schools, with really good teachers, it feels like you’re on the edge of a precipice. In England total school funding has fallen by 8% since 2010. Education spending as a percentage of gross national product has fallen from 5.8% to 4%. We know what the pinch of funding cuts feels like – the respite stays that have been withdrawn, the transport to playscheme that evaporated, the wheelchair appointments can’t keep up with the growth of Ben’s legs. My family has been insulated from the worst, but none of it feels secure. Perhaps we are just one decision away from Ben not being at the school he loves, or getting the help with communication that he needs. 

It doesn’t feel like the system isn’t set up to be fair and right, but rather is trying to keep going in almost intolerable scarcity and it needs to ration the resources it offers. It doesn’t offer additional help when it might be useful, it needs each person to prove beyond all reasonable doubt that the help is essential before the money can be released. 

This should fill us all with rage: for the pupils who aren’t getting the support they need, for the families that have to commit to stressful tribunal processes, and for schools that are struggling to give pupils educational support in a near impossible situation. I’ve written about this before here, and no doubt I will again, because it’s outrageous. The government are encouraging schools and parents to see SEN pupils as draining funds that could otherwise support more kids. They are overseeing a shift that encourages pupils towards special schools, not necessarily because that is the best place for them, but because that is the only place that might have appropriate support. That is a travesty for all our kids, who find themselves educated in less diverse, less inclusive schools.

Who knows what will happen with Ben’s secondary placement. I think it’s common to find a child moving to secondary school stressful but surely it doesn’t need to be this way. The system is set up to pit families against Local Authorities, schools against parents, and the dynamic is forever stacked against those with least power. Education is not this government’s priority and that’s exactly what it feels like.

Of all the things this government is doing to reduce opportunities, increase inequality and further demonstrate its disregard for disabled people, this is the one I am most angry about this week. It’s not fair on our children or their teachers.

Wonder

I have been reading even more books than usual to Ben during lockdown (or whatever we’re meant to call this period now). We have been choosing longer books and taking a week or two to get through them. Max often listens too.

We have just finished Wonder by R.J. Palacio which is about a boy, August, who is ten years old, has facial differences and starts a new school. It’s about how people react to the way he looks and how he makes new friends. Some parts are told from the viewpoint of his sister and his school friends. A lot of it is about his relationship with his parents, how he feels about his appearance and how he manages other people’s behaviour. It’s all the stuff that parents typically worry about when they have children who are different, or actually probably just all parents.

I make a concerted effort to read diverse books to my kids. I seek out stories about people who look different to them, or celebrate different holidays, or live in different kinds of families. I don’t think it’s enough to hope your children will see a range of people in the culture they consume – you have to proactively curate it. I’m not doing in perfectly, but I’m trying.

In the books I buy and read, I don’t protect them from potentially tricky topics. Books are a great way of introducing the beginning of something before it comes time to have a Big Chat, or perhaps there will never need to be a serious chat because books are a great way of introducing nuanced topics and having a whole series of little chats. All chats and topics are different but books have helped me have chats with my kids about flowers, racism and reproduction, just in the last few weeks. Of all the stories, I particularly seek out ones that depict disability because I want to try and provide some balance to the overwhelming majority of the stories Ben hears being about non-disabled people.

So we started reading Wonder, and I found bits of it difficult. There are sections where kids are really mean to August and I worried that I was telling Ben that kids are bullies, but reminded myself that Ben might not relate to August. Not least because his physical differences are entirely different to Ben’s. So I continued, relieved when we got to a bit where August made good friends. Ben was engaged, enjoying the story, showing no signs of distress.

There were a number of points where I welled up while reading – partly because I’m an absolute sucker for this kind of storytelling, and partly because people’s kindness often moves me to tears and August makes a really good friend in the book. There are passages where there is a danger of August being depicted as the kind of ‘inspiration porn’ that so enrages disabled people – the plucky, courageous person who is congratulated for completing an everyday task, living an everyday life. But there is also something beautiful in Wonder about the way August rises above horrible people and makes meaningful connections. His teacher makes a speech at the end: ‘It’s not enough to be kind. One should be kinder than needed… we carry with us, as human beings, not just the capacity to be kind, but the very choice of kindness’, I read to the boys as my voice wobbled around the threat of tears. August is clever, hard working and funny. He makes friends in the book, just through being himself.

When we got to a chapter written by August’s sister, Olivia, I worried because she eloquently describes her parents not having time for her when they are so distracted by her brother. I didn’t (don’t) want Ben to feel like his siblings might be resentful of him, or to plant in Max’s mind that he’s been dealt a bad hand in siblings or families. I found it hard to read the passages where Olivia doesn’t want August to come to a show at her new school, because she is embarrassed that her brother is so different, but she feels awful for feeling that way.

I realised that reading books like this is as important for Max as it is for Ben. It’s easy to forget that having a disabled sibling is, in itself, an identity. It affects so much of who Max is, what he does, and how he lives. I would love for him to see that being Ben’s brother is hard in some ways, and wonderful in others. But there are things he finds difficult, and perhaps it’s helpful for him to know that other siblings find this too. It’s very unlikely he’ll suddenly become resentful of his brother because he heard a character in a book was. And if Max is at all resentful, me pretending he isn’t won’t make it go away. 

What Max mainly wanted to talk about as we read the book was why other kids, friendly and not, were behaving the way they were. Max wondered why one particular boy, Julian, was so mean and why his parents didn’t want him to be friends with August. Max has some experience of kids not liking his brother and far from it making him self-conscious about Ben it has, so far, just made him really sad, which made me even sadder.

But for every unkind character, there is a friendly one. And August’s parents are there beside him. There is a bit at the end where August and his dad are discussing the astronaut helmet that August wore all the time, for years, so people couldn’t see his face. August’s dad is telling him how much he hated the helmet: ‘The real, real, real, real truth is: I missed seeing your face, Auggie. I know you don’t always love it, but you have to understand… I love it. I love this face of yours, Auggie, completely and passionately. And it kind of broke my heart that you were always covering it up.’

‘Oh, that is SUCH a parent thing to say,’ Max groaned. ‘That’s exactly the kind of thing you guys say.’ Too right, kid, and not going to stop anytime soon…

Limping through lockdown

It has now been over four and a half weeks of us being at home – at first in self-isolation because Molly was ill, then in the typical lockdown that everyone is doing. It has been over five weeks since I slipped on a small hill in a kids’ playground and broke three bones in my ankle. Tomorrow will mark exactly five weeks since I was wheeled into surgery, telling James I would see him in two hours, only to return five hours later with three metal plates and ten screws in my very swollen ankle.

I was discharged from hospital two days before Molly got ill and so our lockdown is inextricably linked with my ankle injury and my often clumsy attempts to manoeuvre myself around on crutches, bearing no weight on my left leg. Having a leg in a cast was not ideal preparation for having three children at home, all the time. Yet, when I was first in hospital the thing that upset me the most was being separated from my family. I was so lonely and all I wanted was to be in my own house with my children. So in some ways all my dreams came true!

Once I could leave my bed, my inability to move, carry or help has been difficult and it has felt like the worst timing because what we could do with now, more than anything, is two adults who can both look after our children. My incapacity meant James doing everything, for all of us, for weeks and it was a lot for him. More than once when I tried to be helpful and independent, I fell over. I have found it incredibly frustrating. I am unused to dependency and have found it hard to rely on nurses, my husband and my children for the most basic of my needs.

But in some ways I injured myself at the best possible moment. We had bumped into a friend in the playground just before I fell and so she distracted Max and Molly while I worked out how to get myself to A&E. I had delivered a massive work project the day before I injured myself so it has been okay that I haven’t worked for a month. James had returned from a work trip to Canada two days before I was admitted to hospital. I was discharged from hospital just before the pandemic took full hold, and my limited mobility is less of an issue since I’m barely allowed to leave my house.

We have bought me a one-legged scooter and so I can now prop my healing leg on it and potter around the house. I can cook, and carry things from one place to another without needing to pack them into my rucksack. I have made it out to the garden and have played an extremely amateur, ridiculous, game of seated volleyball with Max. I have been reaping all of the benefits of a house without steps, with doorways wide enough for a scooter, and a lift that takes me to my bedroom. I have been so grateful for the mobility aids that have allowed me to move around and increasingly parent my children. And yet I am so resentful that I can’t use my legs like I am used to. It’s been a surprise to find myself dependent on crutches and a scooter and I struggle to reconcile my long-standing belief that mobility aids are freeing, not confining, with feeling incredibly constrained, all of the time. I hope this is more a process of change management in my own mind than latent prejudice against disability, but it’s hard to fathom my own thoughts when I have only left the house twice in a month and we’re in the midst of a pandemic.

Because obviously the pandemic weighs heavily. When Molly was ill, we attempted to self-isolate her and Max from Ben, so after years of encouraging our children to touch, kiss and cuddle each other we had to stop Molly going near Ben in the house. It felt necessarily but wrong. Max stopped sleeping in the same room as Ben. We still had some carers coming to spend time with Ben, and we had to tell Molly and Max not to go downstairs when they were here. After years of encouraging an ease around Ben and his carers, we had to police everyone’s exposure to each other, spraying cleaning fluid in their wake. It was heart-breaking. I’m not sure how long it will take for us to undo our policing of touch.

As Molly entered her second full week of illness, it seemed like Ben was in a vulnerable category and we tried to work out what we would do if he got ill. We spoke to Ben’s lead consultant and he suggested a plan which made us feel reassured, but we were on tenterhooks every time Ben coughed or grimaced. Somehow he has so far remained unaffected, and now we are all healthy, touch wood. It now seems like Ben no longer officially counts as vulnerable, though who knows, and there is only so much we can do to keep him safe. We remain vigilant, nervous and concerned.

In the midst of all of this, I scoured the internet for guidance about how we should manage carers coming into the house. Not having carers was not an option given my inability to look after Ben and James needing to look after all five of us. I cannot push Ben’s wheelchair or move him between his chair and his bed. I can barely change him without wobbling perilously and can’t get to him in the night in any kind of timely fashion. So we came up with our own version of guidelines for how we would manage the risk, long before the government produced anything helpful.

I noticed news reports that told us, with a tone of reassurance, that many of the people who died had underlying health conditions. I knew that is how Ben would be described. I was relieved that children did not seem to be among the worst affected, but then there were reports of child deaths, and plenty of other people to still be worried about. When NICE published guidance setting out how access to critical care would be managed, I noticed that it was on the basis of frailty, and that according to their criteria Ben would be frail. I realised these criteria didn’t apply to children, and I was both relieved and still stricken, because Ben will one day be a disabled (apparently frail) adult, and we have friends who are disabled adults. I am still shocked that a formal, public document set out the ways in which a disabled person’s access to life-saving treatment would be considered rather than assumed. It was later edited to say the guidance should not be used with younger disabled people, but why did it take outrage to prompt that clarification? Of the many things I never imagined before COVID-19 appeared, I didn’t think I would ever worry whether my child would have to compete for medical attention and whether his disability would count against him if he did. 

I’ve barely articulated any of these thoughts because I am mainly aware of our luck. We are currently healthy, in a large house with a garden where we have time to appreciate the tulips. We have offers of supplies and the money to buy them. I have a husband to help, and subscriptions to streaming services. We have as much hope as anyone else does of home-schooling our children, albeit with the colossal pressure of being not only Ben’s teacher but also his physiotherapist, occupational therapist, speech and language therapist and support system. 

We could be in a much more difficult situation, and I know many are. We are okay – letting our kids watch marginally inappropriate films, making and eating too many cakes and wondering how to get any work done. We are more fortunate than many, yet each morning I remember that this crisis has laid bare an assumption that Ben’s life might be, if not now then in the future, a little bit less valuable than someone else’s and I just hope that we are going to weather this storm and then come out fighting, with strong ankles perhaps.

How to wee in space, or South Kensington

Do you know about Changing Places? Ben can’t use a standard accessible toilet so when are we are away from our house we need a Changing Place which is a room with a changing bench, a hoist and room for us and his wheelchair. Without a room like this, our options for visiting places are limited.

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Many of our favourite places to visit in London have taken it upon themselves to install Changing Places: Tate Modern, Barbican, Royal Festival Hall. They have just opened a new one at City Hall, and there’s one in Queen Elizabeth Olympic Park.

Yet other places have so far been apparently incapable of finding the space, funding or enthusiasm to install one. Between the Science Museum, the Natural History Museum and the Victoria and Albert Museum there are no facilities to cater to any of their more disabled visitors despite the thousands that must visit every year. The museums are next to each other in Kensington – it would be easy for disabled visitors to move from one museum to the other to find the facilities they need but according to the Changing Places map it is a barren wasteland.

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This means that when we visit one of these museums, which we do often, our day is determined by how long it is reasonable to stay out before we need to return home. It doesn’t matter how much fun we are having, how interested Ben is in nocturnal creatures or how much Max doesn’t want to leave Wonderlab. We have to leave and drive home because there is no toilet within two miles for Ben to use.

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Let’s just think for a second about using the loo, or rather not being able to use the loo. I’m a woman so I’m used to queueing, but I know there’s going to somewhere I can use pretty much everywhere. I drink a lot of tea and water, I’ve had three kids, I wee a lot. Just imagine not being able to go to the loo, restricting fluids and organising your whole day, life, around where there might be a loo. People like Ben have to tolerate a certain amount of discomfort to get to see more of a museum.

During the recent anniversary of the moon landings I read a fascinating Twitter thread about peeing in space. The author, a science fiction writer, points out that it is a common misconception that women couldn’t go into space initially because they lacked the technology for them to pee. Actually, the technology for anyone to pee in space was untested and initial space flights involved a lot of men weeing in their spacesuits and capsules smelling of poo. By the time women were going into space, NASA developed a solution for launch and spacewalks called the Maximum Absorbency Garment (MAG) which was, essentially, a large nappy or pad. Men used them too because they were more comfortable and involved less pee floating around the cabin.

It is super cool that the Science Museum is giving it’s disabled visitors a genuine space experience by leaving them to sit in a MAG while admiring a lunar module, but it would be better to have proper facilities. At the cutting edge of human endeavour, forty years ago, it seemed reasonable for astronauts to wear pads for long periods of time. On a Tuesday morning in the school holidays, in 2019, it does not seem reasonable. It appears that public institutions in central London don’t care enough about their disabled visitors to provide for them.

Presumably at the heart of this is people’s incapacity to imagine what they have not experienced. As a Continence Nurse said to me recently, ‘If I could persuade NHS managers to experience what my patients do, they might provide more for my patients and install Changing Places in hospitals’. Imagine the results we might have if MPs or Museum Directors got the full MAG experience.

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Over the last few months I contacted the South Kensington museums about this issue. The V&A and Natural History Museums told me they have hopeful plans to install Changing Places in 2020. In the meantime the Natural History Museum says it can provide a mobile Changing Place on request. That doesn’t allow for a great deal of spontaneity, as it means we need to plan trips sufficiently in advance, but it is a good interim solution. The Science Museum hasn’t yet responded.

The Changing Places campaign estimates there are quarter of a million people in the UK who have some kind of disability and cannot use a standard accessible toilet. Yet there is no requirement for public buildings, old or new, to install Changing Places.

Thousands of people are living their lives constrained or in discomfort due to a lack of loos they can use. Surely if we can get people into space we could provide a few more specialised loos on earth?

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‘This is Ben. He’s playing the iPad.’

About five years ago I did a BBC Radio 5 Live interview, which was indeed live, about Ben’s nativity play which we had been to the day before at his then school. The BBC had been filming the rehearsals for the play and interviewing parents before the final performance, and a lovely film featured on their website. It was also picked up by 5 Live and Ben’s school asked if I could be interviewed on air. I said I’d think about it and spoke to my husband, James, who said obviously I should do it – why wouldn’t I? And he was, of course, right.

Before talking directly to the presenter on air I had a conversation with the producer of the show who asked about nativity play. He was friendly, but it was clear the story they were looking or hoping for (similar to the website headline: ‘The parents who never expected to see their child in a nativity play’) was one of my surprise that my disabled child had taken part in a nativity play. Ideally I would talk about how amazed I was, that I had never expected this to happen because my child was, you know, disabled.

I gently pushed back and said the play had been amazing but not beyond what I had dreamt for my son, because the school was great so it was entirely within expectations that they’d do a Christmas performance. Then I tried to give them an alternative story (encouraged by James who has done substantially more media interviews) which worked. When I was put on air and talking to the presenter she asked about Ben’s progress at school and I told everyone that he’d read new words the week before which was a much better, feelgood, story. I wrote a blog about it at the time here.

I had never thought about nativity plays and been sad that Ben would never get to be in one. I’d never really thought about nativity plays at all – for either (at the time I had two) of my children. I don’t spend much time thinking about whether they will or won’t take part in these rites of passage. But if I had then I would have presumed that Ben’s excellent schools would make some version of it happen, and they have – we’ve been to a Christmas play every year since Ben started school. I wouldn’t say he has always enjoyed them, but they have happened.

Over the years Ben has got better at being able to take part in these kinds of performances without finding it all too overwhelmingly bright, loud, unexpected and unpredictable. His current school has an Awards Night every year where all of the pupils’ achievements are celebrated. There are some speeches and performances and each child goes up onto the stage to accept a certificate. The first time we went Ben hated most of it, but particularly the moment when he had to go up to the stage, and we wheeled him off the stage in tears straight to the car to drive home, leaving six members of our extended family clapping for children they were not related to. He gets overstimulated by the cacophony of music, clapping, lights, people and being the centre of attention. This kind of event doesn’t happen every day and therefore is hard to handle for him.

We didn’t go to the second awards night. We gave the third a try and didn’t invite other family; Ben’s crying that year wasn’t quite as loud but still heartfelt. This year we tried again and prepped thoroughly. We talked Ben through it for days before, agreed with him who would go onto the stage with him. As the ceremony started James read furiously from a poetry book and Ben allowed himself to be occasionally distracted. When it came to his class’s turn, James and Max wheeled him up to the side of the stage and delivered joke after joke to Ben.

I watched nervously from the audience as they came up to the stage and the headteacher handed Ben his certificate. I could see Ben was tense, already sweating from the stress of it all, but HE WAS NOT CRYING. He even managed a small hint of a smile. And then they wheeled off. Max appeared a few moment later demanding more sweets and when James and Ben returned to our seats we agreed we shouldn’t push our luck and beat a jubilant retreat to the car.

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So when, a week later, the school asked us whether Ben should take part in an evening music performance we were unsure. They reminded us that we had said no the year before. But now, fresh from the success of awards night, maybe we should give it a go? It’s a delicate balance with these things between it feeling wrong to force Ben to take part in events he hates and making him stretch his comfort zone so that he can discover that it’s broader than he thought. We said yes.

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On the day Ben’s teacher said they would take the kids to a rehearsal between the end of school and the performance so we just needed to turn up at the venue at 7pm. We had sent in his dinner that morning and they got him ready to go. We were so nervous we left home early and had time for an unusual Monday evening drink – just two parents having a semi-relaxed glass of wine before going to watch their son in a concert. It felt like a Thing that we hadn’t been involved in any of the preparation for this – we weren’t the ones getting him fed and changed and ready – we would just be spectators.

The performance was in a converted church and we took our seats looking down on the large area of floor which was the stage, where once there would have been an altar. Ben and his gang (five kids, five teachers/assistants because that’s how special needs schools roll) were at the side of the stage and Ben looked more relaxed than we had expected. The concert began and it was a mixture of folksongs played by professional musicians and pieces with children from other, mainstream, schools. We could see Ben getting more tense but his teacher was sitting right next to him and talked him through it.

When it came to Ben’s school’s turn they wheeled the children onto the stage as the compere/conductor explained that musicians from the London Symphony Orchestra had been visiting the school and had composed a piece with the pupils. He introduced each of the children and their instrument: ‘This is Ben. He is playing the ipad’. Ben had a trumpeter standing directly in front of him and when he touched the ipad with his hand the notes changed according to the pressure and direction of his touch. The trumpeter then played each phrase back, mimicking his ipad music, like a freeform duet. Other pupils played drums and buttons linked to recorded music. It was glorious.

Ben sat patiently at the side of the stage for the rest of the concert, listening to beautiful children’s choirs and enthusiastic drumming. At the end we collected him, thanking his teacher for the utterly brilliant way she had helped steward Ben’s emotions through the evening, and saying hello to the trumpeter who was chatting to Ben. We paused outside the church to collect ourselves and our belongings and people came up to Ben to say hello, to say well done. One lady bent down to his level and stage whispered, ‘Ben. That. Was. Fabulous.’ As we walked away, the evening warm and still light, a family coming the other way said, ‘Bye Ben, well done.’ We don’t know any of these people. None of them knew his name before his performance. It was amazing.

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I hadn’t imagined Ben would perform with LSO musicians, not because I’d thought he wouldn’t be able to do it because he’s disabled and would be sitting at home excluded from normal childhood opportunities (see BBC headline above), but because I didn’t know my children would have the opportunity to perform with LSO musicians at all. I would have been proud of any of them taking part in a ‘proper’ concert like this.

But particularly for Ben – it’s not that I’m amazed that he took part in these performances despite his disability; it’s that I’m so proud of him taking part in these performances because he’s disabled. Because he’s worked (working) hard to overcome all the reasons why things like this are sometimes overwhelming for him. I think it’s amazing that he has got to the point of being able to enjoy these opportunities despite finding it hard to cope with the noise, stress, unfamiliarity they involve. I love that the iPad was treated equally to the trumpet, and his disability incorporated, and that all the other parents and children remembered his name and came to say hello. It was one of THOSE moments which I’ll talk about when I’m old and dotty and reminiscing about how much joy my children brought me.

What to expect from grown-ups

I recently took Ben to a new place, for a new thing, which involved us swimming in a pool. It was a brilliant morning – the kind of pinch-me event that makes me so grateful that Ben has these opportunities, that I get to do this stuff with him.

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But accompanying the #blessed vibe, there was the cold, hard reality of needing to get Ben and me into our swimming costumes. We were at an unfamiliar school and there was a teaching assistant on hand to help get Ben and another child ready. As I got Ben onto the changing plinth, she said she would get Ben undressed while I got changed. This seemed sensible since I couldn’t really get naked in room full of strangers, so I left her to take Ben’s jumper and tshirt off while I popped next door. When I came back, I took over and continued to undress Ben. As I was putting some of his clothing in our bag, she started to undress Ben’s bottom half. I said I would do it but as I did, she continued to help. I repeated that I could do it.

She was being helpful. But it felt uncomfortable. I was there and happy to do all of it. We didn’t need help. Ben didn’t know her, and there is an intimacy to undressing which feels odd with someone who he has just met, who he had been cursorily introduced to, and who he is now expected to be on intimate, but unequal, terms.

Ben will always require assistance, he will need people (mostly able-bodied) to help him access the world. There is likely to be an imbalance in power and a dynamic in these relationships where Ben is more dependent, and this be interpreted as weakness. The solution isn’t for me or James to do everything for him, and for us to reduce his dependence on other people by increasing his dependence on us as parents. I am thinking about how to frame these interactions in an age-appropriate way – all children are dependent on adults in some way, but for Ben that means help to be changed and fed as well as taught and entertained.

Some of this is basic – it’s reasonable for Ben to expect people to introduce themselves and explain or ask him about what’s going to happen next before they start to undress him. Some of it is more nuanced. There are people whom Ben immediately likes and trusts, but we can’t expect that this magical energy will materialise in every interaction. Maybe sometimes Ben’s immediate need to be changed, fed, moved or assisted overrides his lack of immediate warmth to the person doing the changing, feeding or moving. Children don’t get to choose all of the adults who they interact with, but I think they should have a sense of what is okay and what is not, and should always feel safe and respected.

Last year we had a carer at home who was mainly assisting and entertaining Ben with us at the weekend. We weren’t convinced she was hugely enriching Ben’s life but with a full family life including two other kids, she helped ensure Ben had what he needed and was read some books. I felt guilty that he was spending time with her (albeit only a few hours), but that’s the bread and butter of being a mother to three kids.

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One afternoon I went upstairs to see how Ben was getting on and as I walked into his room she was hoisting him out of his chair in a way that was wrong, despite having been shown how we do this to make sure Ben is safe and comfortable. I then realised that she hadn’t moved him all afternoon and he was wet and uncomfortable from being in the same chair for hours. I was shocked and explained to her why all of this was unacceptable in front of Ben before asking her to leave the room and having a further chat with her on our landing. I felt protective, like a lioness who needed to corral her cubs and keep them close forever, and I asked her to leave. I bathed Ben carefully and put him in dry, clean clothes and we all watched TV together.

I had reacted in the moment. We generally try to have conversations with Ben’s carers away from the children as we don’t want our house to be a constant management exercise witnessed by them, and they need to have relationships with the carers we employ independently of us. But as I calmed down, I thought it was totally fine for Ben to have witnessed my shock and to know that I thought it was unacceptable.

It is not right for Ben to feel unsafe in his own house. It is not okay for him to be dependent on others for his personal care and for those people to not give it the thought and attention that they should. He shouldn’t have to put up with mediocre communication and monosyllabic conversation. He needs to be able to trust people with intimate moments of access.

I think it’s appropriate for him to see us calling out moments where people do this wrong. We need to make explicit what our expectations are, and to hopefully build in him a sense of what he can expect from adults, how much he has to put up with and when he’s allowed to protest. Later that night Molly, then age two, asked what the carer had done that was ‘naughty’ because she had heard my conversation with her on the landing and had (correctly) interpreted it as a telling off. I told her that the carer had done something wrong to Ben and she had gone home.

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As I put Ben to bed, I explained that it wasn’t okay for the carer to have moved him in a way that was risky, to have left him in his wheelchair for so long. I don’t know for sure how much of this he understood, but I hope Ben – and Max and Molly – know that he has a right to feel safe and comfortable, and grown-ups aren’t always right.

Clicking in the gallery

We took the kids to Tate Britain at the weekend. It’s a good thing to do first thing on a Sunday morning – we can drive there easily, it’s not busy, and we can get coffee and pastries in the café which incentivises the whole trip for all of us.

It was the last day of the Turner Prize exhibition so I had a chat with a guy at the front desk about whether it was suitable for children. I mentioned nudity, and he started talking through whether there were naked people in any of the pieces. I had to clarify that nudity wasn’t the problem, it was what the potentially nude people were doing, since I’d accidentally once walked Ben into a room of Gilbert & George works which were utterly inappropriate. Oh, no, no sex, he said.

And he was right, no sex. But the four nominees for the Turner Prize had all presented video works, two of which were about people who were being or had been killed. Of the other two, we all enjoyed some of a film about the legacy of colonialism in Tripoli. Yes, really. It was beautiful and interesting, and Molly only asked to leave four times.

Video art is perfect for Ben. He is drawn to screens, and these screens were huge. Each artist’s room had just one bench and people came and went so it was easy to manoeuvre Ben’s wheelchair in and out.

James took Ben into a film about queerness and Scotland which seemed safe for kids. For most of the time it was silent, with sweeping footage of ancient standing stones in remote Scottish islands. The other visitors were sitting silently and Ben was engrossed. The only noise was the rhythmical clicks of Ben’s tongue.

Ben has dystonia, which means he has involuntary movements in his muscles. It makes it very hard for him to control his own movements which affects his ability to sit, walk and talk. It also affects the way his tongue works, in that it moves a lot but not in a way that makes eating possible. This means Ben doesn’t control his saliva, and he makes a clicking noise sometimes as he moves his tongue within his mouth.

When he was first at nursery the staff would call him “Dolphin Boy”, for the little clicks he would make throughout the day, like he was trying to communicate on some level unintelligible to mere humans. He would make the sound when he was relaxed or interested in something – never when he was stressed or uncomfortable, when his mouth would be tense. He would often click when he was lying in bed, or when we were hanging out at home and he was content. Over the years he has done it less.

When Ben was younger we were self-conscious about him making noises, particularly in very quiet places. For a child who doesn’t talk, Ben can be quite noisy. He often kicks which makes his wheelchair squeak, or makes noises to complain, or shrieks if he is excited. It doesn’t matter if you’re in open, noisy areas but in silent galleries (or cinemas, restaurants, planetariums, theatres) the noises can seem loud and potentially disruptive. I would hate the idea of other people being bothered by the noise. I’m the kind of person who would rather not eat sweets than risk making loud crackles with a packet of fruit pastilles in a cinema.

Over the years we have come to notice or care about this less and less. If Ben is making a lot of noise he is often not enjoying himself, and we will take him somewhere else, out of the theatre. But if he’s making noise while enjoying something, then so be it. Ben is often the one laughing loudest and longest at something funny at the cinema, but he may also be making some noise in the quiet bits. If someone else is bothered by a disabled child making some noise, then I don’t really care. Odds are they could visit again, whereas outings for us are logistical challenges. I think expecting one mode of behaviour from all humans in every public space is, when you start to think about it, ridiculous. And actually, much of my anxiety about disrupting other people with our family’s noise is (was) presumptive – I imagine people are annoyed, when the vast majority of people either haven’t heard it, or have but are relaxed about it. We meet lots of people who are friendly to us in these situations, even when we’re blocking their exit from the row with Ben’s wheelchair and the four hundred bags we like to carry with us at any one time.

Still, it’s one thing to intellectually decide that it’s okay for Ben to make his noises in places where they might draw attention, but it can be another to not feel a twinge of anxiety about it. Over time, I’ve come to marry the two. I hear the noises themselves less, I’m less likely to see whether other people have noticed, and I care less about all of it.

In the dark room at Tate, James said no-one turned towards the noise as he, Ben and a group of strangers watched sweeping Scottish scenery accompanied by the rhythmical clicks of Ben being content. I think that’s kind of wonderful.

We then rewarded ourselves with croissants and cappuccinos, and then wandered through the main galleries of Tate looking at art back through the centuries. Somewhere towards the sixteenth century Molly took her shoes off and tried to jump off the benches, before shouting that she wanted to run. I tried to tame her while James talked to the boys about paintings of men on horses, and paintings of men fighting.

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Molly’s just turned three, and it’s an ‘interesting’ age. During our trip to Tate our disabled child was at no point the one that we were self-conscious about, that we were noticing people’s reactions to, or worrying whether his behaviour was appropriate for the space. Partly because I think the noises Ben makes are largely appropriate to all spaces, but also because no-one notices him when a small but furious girl is careering towards art of national importance, tripping people up as she goes. There’s a moral in there somewhere, beyond the immediate lesson that one way to distract yourself from overthinking your disabled child is to take a three year old whirlwind with you wherever you go.

‘More disabled’

You should all listen to a podcast called Distraction Pieces with Scroobius Pip where he interviews Jess Thom (link here). They are two thoughtful, interesting, amusing people talking about Jess’s work and life. This is in itself fascinating, but the podcast is also a glorious auditory celebration of difference, as Thom has Tourette Syndrome and Scoobius Pip has a stammer.

I found that when I first started listening I was really aware of their particular styles of speech but by the end (and it’s over an hour long) I hardly noticed. Thom talks about how her family and best friends barely notice her verbal tics – they are so familiar with them and her that they unconsciously screen them out as they listen to what she’s saying. I could feel myself doing this as I listened.

Isn’t that the way… Something new and unfamiliar draws your attention but given enough exposure and time your brain will accommodate it. One’s perception of another persons characteristics is going to depend on your familiarity with them (or with disabled people in general), and on your own preconceptions. I notice this with Ben. People meeting him for the first time can be struck by his disability, by his wheelchair, and sometimes can’t quite get past that to see a boy. We are so familiar with his body now.

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Apart from good discussions about the intersection of creativity and inclusivity, Thom also talks about the social model of disability (the idea people are disabled by society and their environment rather than their own impairments – I talk a bit about it here), making the point that she feels more or less disabled depending on the context. In an environment where she faces steps (she uses a wheelchair) or where her verbal and physical tics are not welcome, she will feel more disabled than somewhere where these needs are well accommodated.

This isn’t the first time I have heard these concepts, but each time I hear them explained eloquently I have an ‘Aha!’ moment and I hope everyone else does too. It requires a flip of mind to realise that the step is the problem, not the wheelchair. And it requires a degree of nuance to perceive disability as a constantly shifting scale that depends on the day, the activity, the environment, the level of support rather than an incontrovertible fact.

I find myself more aware of Ben’s disability when we are somewhere where he is the exception, particularly somewhere where the doors are a bit small, the spaces between the tables narrow, and we have to make an almighty fuss just to get him inside. Or in a theatre where it’s not clear that people are happy with Ben’s noises and his creaking wheelchair. In these contexts we, and the people we are squeezing past, become hyperaware of his disability.

At the other end of the spectrum, our house is where Ben is least disabled. I am so familiar with his body I largely don’t notice unpredictable movements when I look at him and will often only really notice noises that are communicative. At home he can, with help, go everywhere and do what he needs and wants to do. He can move around with his siblings, visit his parents in bed, be part of the action or somewhere quiet. He can have a bath every night. We can care for him easily and facilitate the things he enjoys doing. The house works with us, it encourages family life and visitors.

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It is possible to appreciate all of these advantages, and the privilege of having been able to make this house ours, because we have lived in many houses, visited many pools and cafes and houses that worked against us in small and big ways.

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The scale from ‘less disabled’ to ‘more disabled’ is not linear, and does not correlate with ‘better’ to ‘worse’. When I say Ben is ‘least disabled’ in our house, I do not mean that to be ‘more disabled’ is negative – because I do not believe that to be disabled is bad. “Disabled” is not a value judgement, it’s a description or an identity. When I describe Ben as least disabled in our house I mean that this is the environment in which there are least barriers to him doing what he wants to do, being who he wants to be, going where he wants to go (or where I think he should go, since I am his mother). This is thinking based on the ‘social model’ which Jess Thom refers to in the podcast.

So go and listen to the podcast. Maybe it will challenge your preconceptions about what people on podcasts should sound like. Maybe you will be inspired by Jess Thom’s creative work. Maybe it will expand your understanding of disability a little. I guarantee you’ll learn something, and laugh.