A Sibling Perspective: Interview with Fiona

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. 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 and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – usually A Parent Perspective, but this time A Sibling Perspective – with Fiona, who lives with her disabled brother, Ewan. I found it so interesting to hear her thoughts about growing up with her brother.



Could you describe your family?

My mum and dad have three children – I’m the oldest, then my sister, Kirsty, then Ewan who is three years younger than me and is disabled. We grew up in Sussex and then moved to Scotland when Ewan left school to a house that is designed around Ewan’s needs. Ewan and I have always been incredibly close. My parents were Ewan’s carers but they’re not getting any younger and I wanted to be involved so now I am his main carer. My parents, Ewan, my husband Dom and I all live together which means there’s a lot of bickering because we all have strong opinions! But it works well for Ewan because he has me and my husband around and we can go out and do things very naturally. We do have paid carers as well.

Could describe Ewan and what he likes doing?

Ewan’s very cheeky. He loves to entertain us by doing something daft or mischievous. We both work at a candle shop, which is a social enterprise designed for people with disabilities. He and I are joint workshop leaders which I think Ewan really enjoys. We’re lucky to have met a nice group of friends, both with and without disabilities, and we go out – evenings at the pub, lunches, an art class. Ewan’s quite social and loves spending time with my husband, Dom.

Ewan is 36. We describe him as being disabled – having a learning disability. He needs a lot of support though he can do lots himself. He uses a wheelchair and doesn’t speak but he has fantastic communication. Ewan uses Makaton sign language, or at least his version of it! He also has some vocalisations – he’ll make sounds for yes, no, and some names that we recognise. He can get anxious in some situations and find them challenging.

How does Ewan’s disability affect his day to day life? What are the things that you, as a family, plan around?

At home he’s just Ewan. If we’re planning a day out sometimes it can be difficult to know what we’ll be able to do, what he’ll find interesting, whether we’ll be able to get in the building, whether there will be a Changing Place. From his point of view, his anxiety affects him. If Ewan’s worried or excited about something he has a lot of spasms in his arm, and that can cause pain.

Do you remember as a child realising that Ewan was different to you and your sister?

We didn’t know when Ewan born that he was disabled. Because he’s the youngest I think my mum realised that he wasn’t doing things that my sister and I had done. I remember being told that Ewan was blind and ‘handicapped’ (as it was in those days), and then he didn’t learn to walk and talk. He was obviously different but I don’t remember it really being much of an issue. I’ve always been very close to Ewan and I’m very proud of him, so people would get told about him all the time! I’ve never experienced anything negative about him being my brother.

To say that my parents weren’t fazed by it sounds ridiculous, but that’s the way it came across. Obviously he needed different things, different care, but it was always more of a practical thing, and mum and dad were very aware of trying to treat us all the same.

Did you choose to be Ewan’s carer?

Yes, I chose it because I feel that it works. It doesn’t really feel like I’m his carer except for the obvious things where we help him physically. It’s just our relationship and it’s fun. The hardest thing for me is stepping back and entrusting somebody else with the role because it can be difficult for other people to know how much independence to give Ewan, for example, and they can be tempted to make a choice for on his behalf or perhaps take over an activity.

Was there a natural progression over time as you took over from your parents?

When my husband and I moved to Scotland we allocated which days each of us would do Ewan’s care and I always wanted more days so we could go and do fun things. Now I support Ewan Monday to Friday and my parents do it at the weekends, though since we live with each other there’s overlap.

My parents know a lot more than I do about Ewan’s medical history and so they are more involved with that side of his care. Ewan used to have more health worries but thankfully since his epilepsy has been under control he’s been better. I am starting to take him to important hospital appointments on my own.

As a familywe bicker a lot, but not over Ewan’s care. I say I don’t want other people worrying about us because of Ewan, but I was worried about my parents and whether they were coping with all the care that they were doing before we moved up here. And now, they worry about me. I think that’s what families do!

What has worked particularly well for Ewan at particular stages of his life?

From the age of six he went to a brilliant school in Sussex. The whole school was geared towards their students, all of whom had very complex disabilities. They did everything, like scout camp for example. Ewan had the opportunity to do so many things, learned loads, and he enjoyed it. He’s not really had the same opportunities since he left school because not everywhere has the facilities.

When we moved to Scotland there were a few disabled children just leaving the high school and there was nothing here aimed at people with disabilities, which is why things like the candle shop came about. I’m talking on Ewan’s behalf here, but I think we’ve been really lucky. It feels like we’ve been in the right place at the right time.

Are there things that have been particularly challenging either for him, or for you as a family?

Ewan does always seem to be quite happy and he doesn’t seem to worry if he can’t do something. I think we lived in a bit of a false sense of security for a long time, thinking that he had everything he needed at home. It’s only since finding the first Changing Places toilet that the penny dropped for me, and I wondered why we were only just discovering them. Noticing how inaccessible places are makes me angry and frustrated. I think we’ve been incredibly lucky compared to many other people, in terms of support and services. We have been in the right place at the right time.

I think that no one talks about the benefits of having a disabled sibling…

I agree, or they do but it’s that ‘inspiring’ thing. I guess it’s hard to appreciate unless it is your experience. I know friends who have had harder times that us – we’re very lucky that Ewan’s health is good. If he didn’t sleep or needed a lot of medical attention our experiences would be different. I feel like we’re very lucky. Sometimes I don’t understand how other people don’t get it and don’t see the world like I do, and then I remember that they’re not all as fortunate as I am.

Do you have any advice for other siblings or for parents of disabled children or adults?

I’m not really in a position to give advice, but perhaps it would be: don’t compare. I’m not a parent but I think we’re all individuals. We’re all going to be the people that we’re meant to be, irrespective of disability. You can’t possibly compare one person to another, or the speed at which they’re doing something. I think my parents knew Ewan was going to be different so didn’t compare or worry about milestones.

I’ve spoken to my mum about it and she was upset when she first heard Ewan’s diagnosis but that’s the only sad thing I’ve ever heard. I sometimes feel like families are beating themselves up for not doing enough therapy with their children, that they think they’re not doing the best by their child, and that’s quite hard to watch. I think what will be will be.

You can find Fiona on Instagram @ewieandfi and on Twitter @fmmchiarini

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…

‘My Brudder is Bisabled’

This is an elaboration on an Instagram post from May. You can follow me on Instagram for cute photos of my kids and occasional thoughts @jessmox

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Molly helped me as I was putting Ben’s AFOs on one morning (AFO: ankle-foot orthosis – a custom made plastic splint to support the foot and ankle and keep them straight) by picking them up off the floor each time Ben kicked them off. As she climbed back up, she asked why Ben was kicking her in the face? We had a chat about Ben being disabled and I told her that her brain is in her head and it tells her legs how to move, and the messages between Ben’s brain and legs get confused. She’s 3. She listened and moved on.

I think so much of the cause of people feeling disability is unfortunate, bad or alien is because they don’t have the language to discuss it. If adults don’t use straightforward language to talk about disability with kids, and rather refuse to discuss it or use opaque, unfamiliar words, it reinforces the idea that there is something to be scared of or intimidated by. They get the impression there is something awkward that parents don’t want to discuss. Kids are never too young to be given the words to describe different kinds of people. These conversations can be just as cute as any others: ‘my brudder is bisabled!’

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I don’t pretend to speak for everyone on this issue. The rich variety of humans means people like to be called different things, but disabled is a descriptive term not a slur, and it is the most appropriate word to describe Ben along with boy, child, white, male and awesome. Disabled is a political term used to describe people who are disadvantaged and excluded because of their impairments.

Other people would like to be called other things, or parents would like their children to be called something else. I have friends with children with learning difficulties who would describe their children as having special needs. Some adults would not like to be described as having ‘special needs’ since they would say their needs aren’t special, they are specific.

I have read pieces by disabled people talking about how horrible it is to be stared at, and other pieces saying parents should never tell a child to look away from a disabled person – that this compounds a sense that there is something to be embarrassed about. I know that having a child who points and stares at someone, possible saying something deeply uncomfortable very loudly, is awkward. It can be embarrassing. I also know that having a child who is stared and pointed at can be painful.

But most people don’t take offence at children. Parents are often embarrassed because they realise they don’t know what the right thing to say is and they know they are unprepared for this discussion and perhaps are realising how little they have taught their children about disability and inclusion. Children are often pointing out difference and asking straightforward questions which can be quickly and easily answered.

If you have tried to educate yourself in the terminology of disability and taken time to hear disabled people’s stories you are likely to be less intimidated by getting language wrong. The best way of dealing with all of this is to ask people, or parents, what words they would like to use. You don’t need to know the correct word to describe someone to say hello to them.

I have explained to many children that Ben is disabled – that his body works differently and he cannot always control it. I have answered questions about why I am connecting a tube to his stomach and pushing water through a syringe, or why Ben is dribbling, and how his eyegaze computer works. When children ask these questions their parents often look panicked, but kids are inquisitive and I am happy to explain all of these things because none of it is problematic. It’s all really quite straightforward. A lot of it is technologically amazing.

Molly had a friend come to play today and she showed her some teddies. One of them has a gastrostomy button like Ben. ‘This teddy is disabled’, she said as she showed her friend, ‘and this one is a monkey.’

There’s nothing to be scared of. If in doubt, smile and be kind. Let’s raise our kids right.

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Brothers and sisters

All kids look up to those older than them, and Max is no different. Ben is almost 6, Max is 3 and Max wants to do all of the things Ben does: go to school, go swimming, watch Dennis the Menace.

Max knows Ben is disabled and because chronology is tricky when you are 3, Max wonders whether he will become disabled when he is older. He doesn’t see this as a particularly negative potential development. He wants to know whether he’ll get a wheelchair like Ben’s, or go to the same school when he’s disabled.

There is something bittersweet about our able-bodied son climbing in to Ben’s wheelchair when Ben isn’t using it, about demanding to sit in Ben’s specialist supportive chair to have his snack. I hope it continues like this – Max’s relaxed attitude to disability is how we would all be if we came across more disabled people at school and work.

Over the summer we went to the Liberty Festival at the Olympic Park . It was on one of those British summer days when the rain was relentless and so I can’t say we stayed that long, but they had curated a selection of cultural and sporting events which deserved sunshine and crowds.

One of the activities was a racing track, and a basketball court, with loads of sports wheelchairs for people to use. What an incredibly simple idea, but have you come across it before? Giving people the opportunity to just sit in a wheelchair? There were loads of kids trying to play wheelchair basketball and race along the track. Max was super keen even though the chairs were way too big for him, and off he and Ben went to race (with James pushing Ben). He still talks about it – remembering the time that he got to go in a cool wheelchair and raced against his brother.

I am mindful of this whole business of how you raise siblings of your disabled child. I am pregnant and we expect (fingers crossed, which didn’t go that well with Ben’s birth) another, female, mini-Jess in December. We have thought carefully about this. There are disadvantages to Ben of his parents being spread between other kids, just in terms of time and attention if nothing else – there is less time to model a PODD communication book if another child needs a wee or is in the midst of a meltdown. And there are ever present risks of a sibling feeling like Ben gets the lions share of our attention, of everyone’s attention. Ben’s needs dictate our holidays, mean there are constantly carers in our house, that our lives are disrupted by hospital stays.

Max is also seeing various things I wish he wouldn’t. He recently asked me to teach him how to click with his fingers. When I asked where he’d seen clicking, he recounted in painfully accurate detail an incident a few weeks ago when a lady (who was in a position of responsibility and should have known better) was clicking in Ben’s face as an apparent attempt to distract or entertain him. When James asked her not to, and suggested she speak to Ben rather than click her fingers directly in front of his nose, she got very defensive and we all ended up having an argument. Max was with us and was confused by it all, ‘You and Daddy were very cross, and the lady was shouting, and Ben is in our family’. He thinks people shouldn’t click in Ben’s face, but he likes the general idea of clicking.

We hope all of these potential stresses and strains are convincingly outweighed by the massive advantages of there being more people in our gang. Max loves his brother. He wishes Ben didn’t go to school so that he was at home with us every day. He makes us buy Ben toys so he isn’t left out .

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Meanwhile a chatty 3 year old is a marvellous lubricant in social situations and forces all of us, not least Ben, to engage when it would be easier not to. We do all sorts of things as a family that we wouldn’t do if it were just me, James and Ben. And we all laugh more. We now have to charge the stimulator in Ben’s tummy daily so Max has been comparing Ben to an iPad. Ben thinks this is funny as do we all. (Yes, we overuse screens in our house and Max spends too much time with an iPad – another consequence of being Ben’s brother).

So let’s hope we can produce another one like Max. I mean, of course we won’t. Kids have a habit of being their own people as the two we’ve got have shown. But if the next one is even a bit as accepting then it will be okay.