Living with ADHD and a Heart Condition doesn’t make me ‘brave’ or ‘inspiring’ and neither should it.

Living with ADHD and a Heart Condition doesn’t make me ‘brave’ or ‘inspiring’ and neither should it.

Today’s post is in response to watching the excellent launch video for the #WeThe15 campaign, a campaign being launched by the International Paralymic Committee ahead of the Tokyo Paralympics which start next week. The campaign is the largest multi-organisation collaboration of it’s kind, working across the globe to improve the lives of 15% of the population who live with a disability. This post isn’t some self-deprecation thing, either, it’s an evaluation of why the disabled community is being viewed as brave and inspiring just for living with a disability.

At the start of the video, various people who are featured with a range of different disabilities, both physical, mental and learning, talk about how they are neither brave, or inspiring, or a reminder to others to be happy they don’t have a disability. And I tell you what, it was REFRESHING to see. I’m not going to shy away modestly from the fact I have been called both brave and inspiring when talking openly about my heart condition, especially in the run up to my 2013 surgery, and my more recent ADHD diagnosis, it has happened quite a bit actually, and whilst I’m grateful for the well-intentioned compliments, we need to have a think about why we find the disabled, including neurodiverse, population inspiring when they are living their day to day lives.

The #WeThe15 Campaign Launch Video.

You may notice that I have never really talked about myself as ‘disabled’ on a blog post before, and the truth is it’s taken me a long time to overcome my internalised ableism to accept that I am disabled. The definition of disabled under the Equality Act 2010 is if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities, which mainly due to my ADHD, I do. Not accepting this for a long time is not something I am proud of, I should’ve been more accepting and less prejudiced than that, but it is something I am actively working on. It came from two places, firstly prejudice, I wasn’t ‘that bad’ or ‘like them’, which is quite frankly rude and dismissive to a huge population of people. 15% of the population are disabled, we are the largest minority group in the world and there’s over 1 billion of us, but it also shows how disability is still viewed negatively by society and the unconscious impact that has had on me. Especially recently, my eyes have been opened up more around this discourse and I am no expert, but I do know it needs to change. Secondly, it came from a place of not being deserving enough, in short, I didn’t think I was ‘suffering enough’ to be deemed disabled. As a society, we need constant proof and validation that someone is being caused misery and suffering to accept that they are disabled.

ready to face and endure danger or pain; showing courage.

Dictionary definition of ‘Brave’

And this is where we come back around to being ‘brave’ or an ‘inspiration’. The definition of brave, above, is being ready to face and endure danger or pain. I should not need to be brave to live my every day, run of the mill life with a disability. If I am needing to be brave, I am being failed. I should not, as a disabled person, have to live my life in constant pain and/or danger to prove to the society around me that I am actually disabled. And compliments calling disabled people such, although well meaning, show how society views us as having to suffer. Why are we as a society willing to create a world where disabled people are ‘brave’. This isn’t an attack or ‘throwing back’ to those who have complimented me in the past, but collectively we need to stop and think before we call someone brave for living with a disability and think about why we deem them brave, what challenges are they having to overcome that a non-disabled person isn’t, and what are we doing to try and remove those challenges? Life should not be an inherent challenge for me just because my heart was not formed properly and my brain doesn’t produce enough dopamine. Life should not be an inherent challenge for someone with limb difference or those who are blind, purely based on those two facts of their being.

Inspiration I’ll admit I view a bit differently, especially when it comes to things like the Paralympics. Again, there is no reason why we as a community should be ‘inspiring’ just for living our day to day lives. We shouldn’t be required to overcome enough adversity to deem us ‘inspiring’ as standard, but that doesn’t mean it’s not inspiring to see someone achieve something incredible as a disabled person. The people who are about to compete at the Paralympics shouldn’t be seen as ‘inspiring’ because they have a disability they live with, but they absolutely should be seen as inspiring for making it to the top of their chosen sporting field and competing with others of equal, outstanding ability at that event. My favourite sport in the Olympics and Paralympics is the Equestrian sports, I am amazed watching both the Olympians and the Paralympians form an incredible partnership with their horses and compete at such an exquisite level of horsemanship. Of course, it’s wonderful to see how Sophie Christiansen, Sophie Wells, Lee Pearson and Natasha Baker train their horses differently to how Charlotte Dujardin, Carl Hester and Lottie Fry train, to ensure they can form a partnership that works for them and works alongside their disabilities, but I am inspired by them all for their hard work, dedication and incredible talent. I am not inspired by Sophie, Sophie, Lee and Natasha because they live day to day lives with a disability, because I’m not inspired by Charlotte, Carl and Lottie’s going about day to day lives either.

What I’m trying to say is there’s no reason not to be inspired by incredible people gaining amazing achievements, but we have to think about why we’re finding someone inspiring and if it’s purely because they are managing to navigate the world with a disability then we are right back to ‘brave’, where we need to question why they should have to be ‘inspiring’ just to live and again, examine what challenges people are overcoming that we are viewing them as inspiring for and whether that should be an automatic challenge to living with a disability, the vast majority of the time the answer to that question is no, that challenge should not still exist.

And that need for a disabled person to suffer enough to be worthy of help, or that allows us as a society to quickly label someone as ‘brave’ or ‘inspiring’, permeates through our society and discourse around disability and disabled people. When the Pandemic hit in March 2020, it felt a little bit like the world stopped turning, we suddenly as a society had to think quickly about what services were deemed essential and therefore who still needed to go to work in person. Yes, some sectors were needed in person and those people continued to work, but for a large swathe of the population, our home offices and dining room tables very quickly became our workplace, and when companies were faced with ‘get everyone to set up to work from home or stop working’, very quickly, people were at least in parts provided with the equipment and importantly, actively encouraged to work from home. Whilst this was all well and good, it was a slap in the face for the disabled community already working in these jobs who’d time and again been told that working from home was not a reasonable adjustment/not suitable for that job. The Pandemic proved how that was not true, the world kept turning and people kept working. For some who relished the human connection of the office, it was tough and I can’t ignore that, but for those who had been desperate for so long to be given the opportunity to work from home to better support themselves, it was a kick in the teeth. It’s also not taken us very long to forget this in the desperation for people to return to an office. Already I have seen accounts of disabled people being forced back to work in offices which are inaccessible, sometimes also challenging to get to due to transport accessibility issues and generally have a negative affect on their welfare, even though they have worked throughout the Pandemic at home, often performing better due to the benefits of them being at home. In at least one instance so far, I have seen an account of a disabled person committing suicide because they cannot face the thought of going back to how things were. (I will admit this was via Twitter, while admittedly not a peer-reviewed journal level of credibility, it has a very active disabled community and not everything on that site is horseshit). It shows that we as a society are still not willing and ready to support people’s accessibility, even if it has already been proven to be possible, if it inconveniences us or even purely because ‘we just don’t want to’ and frankly, that’s insulting.

My own experiences of this are in terms of accessing the healthcare I need for my condition. For me to access further treatment in the form of therapy for my ADHD, I have to submit an Independent Funding Request, which my Doctor freely told me would be almost certainly declined and to try and ensure that it wasn’t, I would need to prove why I am ‘more deserving’ than others trying to access the same treatment. What this boils down to is, I have to prove I am suffering to be allowed treatment. I am not allowed treatment because I have a condition, I have to be living miserably with it, and crucially, more miserably than other people who also have that condition.

In a similar vain, I am on-paper eligible for PIP payments on multiple accounts due to my different health conditions, but again, I haven’t even bothered applying. The only way to get through a PIP assessment successfully is to tell them about how bad your condition is. They are dehumanising, traumatic, hours-long phone calls to more often than not be told you’re not eligible for any help because you’re not ‘bad enough’. You’re only deemed eligible for support is if you are constantly suffering at the hands of your disability, but I really don’t want to live a life where a) that happens and b) that’s how I view myself. We are not allowed any help for our disability unless it’s making our lives awful, because god forbid we help a happy disabled person who isn’t spending every day challenged. We need to really think critically about why we are so desperate for the disabled community to be challenged and held back by their conditions before daring to help them, why is that? I have a feeling it’s based in the deep rooted, overwhelming-proven-wrong ideas that helping people makes them lazy and dependent and if they’re not suffering (and by that I mean visibly so, as society won’t believe you if there’s no visible sign) they don’t deserve help. It really shouldn’t be like that; I shouldn’t have to be miserable to be supported.

I also think there’s still this huge fear of helping people who are playing the system, that might not really have anything wrong, but by trying to eliminate that, we are making it increasingly difficult for any of the 1 billion people who do have a disability to be treated fairly and get the help and treatment they both need and are perfectly entitled to. The instances of benefit fraud, from the little I know, are actually quite small, they have been overplayed and manipulated by the media to feed a post-war rhetoric that we all need to be able to support ourselves and God forbid anyone gets help and support they weren’t properly entitled to. But it’s sad to see that in our desperation to prevent these small incidences, we are more than willing to make everything even more challenging for those that are fully deserving of the help that is supposedly available. There are people who are severely disabled being denied and struggling to access basic help to ensure they have a good quality of life because people are scared one or two people might get something they don’t strictly need. We are prepared to risk the 15% of the population to crack down on those that probably don’t even total 1% (again, this is my guess, not an actual stat). The fact that society is happy to forgo the disabled at the expense of the tiny minority is quite frankly, disgusting.

So, no, we are not ‘brave’ or ‘inspiring’ by default, we are not your reminder that your life could be so much worse or someone for you to pity. We are living our daily lives, facing more challenges than we should be and we would appreciate people’s help to remove those challenges far more than being called brave or inspiring.

N.B, I am one disabled person in a population of over a billion, I appreciate my view doesn’t represent everyone and other disabled people may not agree with everything I have to say. That is fine, but I am an active part of the disabled community, especially online, and therefore am speaking not only about my own, but other experiences and the general discourse of discussions I have seen.

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