The Disability+ Spotlight || Leanora

Leanora lives in London, and is a member of the Great Britain paraclimbing team. She has a diagnosis of ataxia and Ehlers-Danlos syndrome, which affects her coordination and balance, and causes joint dislocations and neurological symptoms. Although these have been present since birth, it has only been over the past few years that the symptoms began to worsen, and in her early twenties went through the process of being diagnosed with EDS, and then with ataxia. This year she competed at the world paraclimbing championships alongside other disabled athletes and won a bronze medal. One day she hopes for paraclimbing to be part of the paralympics.

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Miggy: Welcome Leanora! I’m so glad to have you here today on the newly minted Disability Spotlight. Let’s start at the beginning,  what do you remember about your early years? Overall how would you categorize your childhood (or do you)? Looking back now, do you have a different view of how those early years have shaped you?

Leanora: I mostly grew up without a diagnosis, though I’ve never been particularly “well.” It was when I was a teenager though that my parents became aware that something was wrong. I grew up with a lot of mental health problems and undiagnosed autism but I was also having pain and fatigue, and we went through this process of trying to get some answers without any success. So it’s hard to put my childhood into a category of “childhood with a disability” and “childhood without a disability.” In so many ways it was both–not having a name for my condition meant I was largely assumed to be able-bodied, and illness and disability wasn’t really centre stage in the way it might have been otherwise, but I also struggled in a lot of ways and it wasn’t always easy not having a simple answer for why that was.

In the end though I went through the process of getting diagnosed alone as an adult, right after I left university, because I’d become quite a lot sicker and I needed answers. Right as I grew into adulthood and got my independence, there was suddenly this role reversal where I would go into hospitals alone and come out with new diagnoses, which I would then explain to my parents and reassure them that I was okay. They had a lot of questions but they’ve also followed my lead in terms of how they deal with it. I wanted to protect them from having to guide me through it and in a lot of ways that’s forced me to take responsibility – I haven’t let people in to sit with me and hear what I was hearing and go through it with me, though I think in other ways I’ve also put pressure on them to be okay with it all. In part I think that comes down to my earlier experiences of illness, where I was largely working things out alone and nobody had answers for me, and that’s given me independence and resilience to cope mentally.
Miggy:  Going along with the question above, can you tell me what your family life was like growing up? Did you have support from your family and siblings? Was there anything you wish they would have done differently? 

Leanora: I come from a very loving family, and we’re actually a lot closer now than we were when I was growing up. Back then there was some conflict between us all, both in terms of my parents’ relationship and the impact that my illnesses were having on family life. I remember them being really calm about the whole thing, but looking back I think they probably hid a lot of their anxieties from me. A lot of my childhood was spent being protected from stress and worry because I think my family wanted to avoid burdening me with that, though I was aware that they desperately wanted me to be well and sometimes that would cause sparks to fly.

I wouldn’t change anything about my upbringing, but I would like to go back and teach my younger self to be more vulnerable and open, because while at the time I didn’t really see myself as “sick,” looking back I see an unwell kid who tried to go it alone when she never really had to. My parents didn’t expect any less of me because of my illness, nor do they now, but I think they’re still surprised at how much I get done while living with chronic illness. They did pretty well to moderate their ambitions for me without doubting my abilities and so I’m quite good at doing the same now. 

Miggy: I know I speak for a lot of disability parents when I say I worry about my daughter being bullied, or discriminated against, for her differences. What was life like for you socially growing up? Were you ever bullied? If so, how did you handle it? Do you have any advice for parents in dealing with these sort of situations?

Leanora: The way things worked out with my diagnosis and the fact that a lot of my health issues developed later on has given me the chance to define my own identity as a disabled person, rather than having it chosen for me by doctors and other adults as a child. But it has been quite weird to learn that I really was disabled all along, it just wasn’t that obvious at the time. Not having the label of “disability” until my early twenties never fully protected me from the feeling of being different, so in a lot of ways I still internalized some of those questions about why I found certain things in life so much more of a struggle than others seemed to. I wasn’t bullied, but I was certainly quite isolated, and I found it hard to form connections with kids my age. That is something I’ve carried with me into adulthood–the places where a lot of people connect aren’t always accessible for me.

What ultimately helped me was getting stuck into hobbies. When you’re in a group of people all working towards the same interest, other differences don’t seem to matter as much. For me that’s been climbing– I’ve been able to join the British paraclimbing team which is obviously made up of disabled people and that’s been so affirming and welcoming. But I also dabbled in things like spoken word poetry and life drawing. I definitely come across situations where there’s awkwardness or I miss out still. I have to cross that bridge each time I come to it but for me, the thing that helps me deal with that is being unapologetic about how I go through the world.

Ultimately I’ve found my way and grown more assured of my right to be different and not to fit the mold, so I’m a little more comfortable with saying “you know what, that’s not for me,” and the best environments are the ones where the people around me respond to that by helping me find something that is. Those spaces exist and are growing, so I feel hopeful for the future, especially for disabled kids who are going to inherit a society that is more welcoming – I’m so inspired by the next generation of teenagers. They’re so engaged and I think that’s going to make the world a more open place.

I spent a lot of time feeling regretful that I was missing out on the life other young people in my city seemed to be living, but then I’ve also had amazing experiences because of my disability. I could not have won a world bronze medal in climbing if there wasn’t space for me as a disabled person to participate, and certainly not if I’d been able bodied. It’s opened doors to these passions in life, and those are the things I’m known for – not the fact that I don’t go to a lot of parties.
Miggy: I’ve written a few posts about the problem with pity (here and here) when it comes to having a disabled daughter and how her biggest obstacles aren’t her physical limitations, but the limitations that come from society and from people who think of her as “a poor thing” or who “feel bad for her.” In other words, discrimination. Could you speak to the issue of discrimination and how it has limited you in your life and what you’d like able-bodied people to know about disability discrimination?

Leanora: The thing that strikes me about your posts about Lamp is her determination to do her thing alongside her able bodied peers, she is just so bold. And I think that’s the problem with pity – it’s based on the idea that there’s a standard to live by and a way to be, and if you don’t have that you don’t have anything. It comes from discomfort with difference, and it’s made to be our problem – we’re out here embracing difference and people who feel pity for disabled people could learn from that.

I hate the idea that I can be an object of pity when I’m so happy in life. For me, when someone comes to me and tells me they feel sorry for me before they even know my name I want to be like, “I’m the world bronze medalist in paraclimbing and my outfit is awesome right now, what did you do today?” My life couldn’t be better. I don’t think I can speak for all disabled people when I say this because it’s not true that we all feel satisfied with what the world has to offer for us, and I think that’s a problem that is created by a lack of access and acceptance. But I don’t have time for the assumption that disabled people can’t achieve great things, be happy or content – like I resent the burden placed on us by people assuming we wish we were different. The feeling of longing to be different is such an awful thing and I don’t like to think the world is projecting that onto disabled people.   

The pity of able-bodied people uses a huge amount of energy that could be channeled into simply making the world a better place for disabled people. I’d like able bodied people to recognize their power to change the narrative, use their privilege to create change, and create space for the disabled community to live equally without those social limitations that have been created through inaccessibility and discrimination. I don’t want anyone to feel sorry for the fact I use a wheelchair, but I do want people to understand what it feels like when I’m on my way to work and can’t get the coffee I’m desperate for because the owner of the coffee shop couldn’t be bothered to put a ramp in. I’m not sad, I’m frustrated, and the most powerful thing the able bodied community can do for us is to be frustrated in solidarity and use that frustration to make it right.

Miggy: As an adult can you tell us how your disability affects your day-to-day life? How has it changed over the years?

Leanora: I have a bunch of conditions which all affect me in slightly different ways. I have ataxia, caused by a deformity in my cerebellum that I’ve had since birth. It’s kind of like being a bit drunk all the time – my coordination and balance are terrible, my vision is blurred and my limbs shake. Then I have Ehlers-Danlos Syndrome, which causes my connective tissues to be faulty at a molecular level – they’re much more fragile. The most obvious manifestation of this is in the joints where ligaments and tendons aren’t really effective at keeping them stable, so I get dislocations, pain and my body is overall just working hard to keep things moving as they should. I can’t really walk long distances or stand for long, and day to day stuff like cooking and cleaning are pretty hard and can be a source of mishaps, and I have to pace myself all the time. My neck is especially unstable right at the top where it joins my skull, which has compromised my brainstem and spinal cord.

Over the years things have got worse – I’ve had it since birth but I think as the demands of life grew the issues uncovered themselves right as my body reached its limit of what it could do without making a scene about it. I got diagnosed I have had treatment and a lot of the worst symptoms are under control. And since I took up climbing, I’ve just become really strong, and that has made such a difference. There’s a lot of conflicting advice out there about exercising with a disability but I only have good things to say about the impact of climbing on my health. So things are better now in terms of my quality of life, though my neurological state kind of changes all the time and I’m not sure what the future holds.Miggy: If you could give any advice to mothers with disabled children, what would it be? 

Leanora: If I had any advice, it would be to do everything you can to build your child’s self esteem in a variety of ways – encourage them to build on their strengths, delve into doing things they enjoy doing, and build a strong sense of identity. Seek out opportunities for your child to see themselves represented as far as possible. That self esteem will go a long way I think towards helping a disabled child build resilience to some of the challenges they might face in life. 

Anything you can do to counter the messages your child might be hearing that their way of moving through the world is less important or valid will be really valuable. It’s true that kids and the world at large isn’t always kind but I was taught early in my life the value of being yourself and I’ve carried that with me on my journey to accepting my disability and finding a way to live my best life as a disabled person. Don’t be afraid to talk about that stuff, I think it’s important for kids to have a means of exploring their feelings and building an understanding of their disability so they can take ownership as they get older and in a way feel proud of who they are. 

I’m not a parent, so I can’t speak to what it’s like raising a disabled child. But as a disabled adult, I can say that there’s a thriving disabled community and opportunities for disabled people to thrive. I can see how parents have a lot of anxieties for their child’s future, but being on the other side of that, I can say that life with a disability is pretty cool – even with its frustrations and contradictions.

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Leanora, as I was putting this together–the first spotlight in a long time–I thought to myself, “Yep… THIS is why I love doing the spotlight.” You shared so many valuable thoughts that really challenge the ideas many able-bodied people have about disability, often that they don’t even realize they have about disability. First, “I hate the idea that I can be an object of pity when I’m so happy in life… I don’t have time for the assumption that disabled people can’t achieve great things, be happy or content – like I resent the burden placed on us by people assuming we wish we were different.” YES. And it’s amazing how young children who are disabled can sense pity–without even understanding the word pity–they know what it feels like and they do. not. want. that. crap. Also, “The pity of able-bodied people uses a huge amount of energy that could be channeled into simply making the world a better place for disabled people.” HELL YES. I can’t tell you how many videos I’ve seen that show futuristic wheelchairs that can climb stairs and at first I thought it was amazing and that surely this was the future of accessibility. But I’ve never seen them in the real world, and like you said,  the amount of money and energy going into these “dream machines” (that aren’t safe and with prohibitive price tags) would be better spent just making the world accessible to everyone, instead of trying to make a few people more accessible to the world. Leanora, thank you so much for sharing your experiences and thoughts as a proud disabled woman living an awesome and fulfilling life. XO

Who-hoo! What a great way to kick off the new Disability+ Spotlight. If you didn’t see my post about why I’ve changed the name from Special Needs Spotlight to Disability Spotlight please check it out here. I still want to include other unique human experiences that don’t necessarily fall under the “disability” category, so I’m still thinking a little deeper about the name, but right now referring to it as the disability plus (using the + sign) feels good. I’d like to cover things like medical conditions, LGBT experiences, HIV+ stories, etc. So please if you or someone you know would like to share your story email me at thislittlemiggy at gmail dot com with “disability+ spotlight” in the subject line.

Thank you so much for being here and have a fantastic weekend!
XO,
Miggy