The importance of disability-only spaces

I am by no means shy or embarrassed about my disability, not anymore. Now I have a visible feeding tube, there is an elephant in every room I walk into. People aren’t sure if they should react to this awkward notion that I am ill, different, disabled. Most of the time, people will choose a conservative ‘wow, you’re looking well!’. But I’m *not* looking well. I have a feeding tube- in no world does someone requiring an invasive medical device look well. If they were well, they wouldn’t need the device. Look past the makeup, the fact that I’m standing and dressed, out of hospital, and you’ll see that my condition is much worse than it’s ever been. Despite my attempts at confidence and positivity, I am absolutely terrified about what my body will present me with next.

This being said, I understand the apprehension. We turn children away from disabilities, put our heads down passing people using wheelchairs, and turn disability into some sort of freak show on shows like ‘The Undateables’. The phrase “so Alice, it appears we both have autism… Well that’s good to know” is burnt into my brain from the countless memes and jokes at the expense of the two participants. Our society, though becoming more self-aware, is intensely ableist. Stigmas continue to be perpetuated; people are still incredibly misunderstood.

Where there’s more understanding, there’s often pity: “Wow, I can’t believe how you do it”. Well, I do it because I have to, I had no other choice, this was the hand I was given. So often, the people around us who aren’t disabled [or differently abled], just don’t know how to approach us. Often they know society is different for us, but they just don’t know how to treat us as an individual living with disability. And I get it. But it is frustrating. 

Well, we are still human, but humanity isn’t always a good benchmark for this sort of thing, given that as a whole society we walk past homeless people and harass people in the media. So often, if we can of course, we’ll smile and nod through the exchange, maybe if you bring the elephant up we’ll have a short discussion and you’ll come away with a little more understanding than you had before, but again this isn’t often that it happens. It’s awkward, though we won't blame you, we blame society and the stigma and a world that wasn't meant for us. This pushes us towards support groups and disability spaces to speak about how awkward and negative our experience with you, with life, with anything has been.

Now these support groups certainly serve a purpose and I am grateful to have access to a supportive community of people living with disability like myself. In tough times I’ve reached out to facebook forums, and I’ve befriended others with disability who document their experience on the internet. But in all my experience, support groups are negative: people post about their struggles and their worst days, they try to put a positive spin on it- ‘today I went into town and had coffee, which was lovely, but now I’m in bed and I can’t move or eat for my symptoms!’-  but in essence it is talking about what has been taken away from you.

To explain my point in perhaps a more obvious way: I recently got an advert about assisted suicide on facebook, which autoplayed. Preaching to the choir, but I digress. The lady in this advert had been in a car accident and her life was forever changed, and was asking for viewers to support a change in the law or at least a neutral stance. In my roughest time, it is easy to fall into the ‘let’s book a trip to Dignitas’ camp. My illness(es) will be life long, it may calm, but will eventually relapse. There is no cure, treatment is brutal, and I can’t enjoy eating anymore. With vascular ehlers-danlos, life expectancy is shortened significantly to around forty years of age. My genes are ‘bad’, unwanted, and illnesses such as mine often get worse when they’re passed on. Having these thoughts on the daily myself is hard enough to fight through to keep a positive and resilient mindset, but having the same thoughts echoed by other people or organisations creates a very destructive cycle. It emphasises the worst, and has me looking on the Dignitas website for the 400^th time ‘just curious’. Disability only spaces such as support groups, where you vent your frustrations and feel better, are fairly negative places and if anything like me, you’ll come away from it thinking about these people- your friends- who are struggling and you can’t do anything to help.

So lets flip this on it’s head.

This week I was shortlisted to Assessment Centre for an internship organised by a disability advocacy and development charity. I won’t say anything else, I will not find out how I did until March and I will overthink it!

If you know anything about me you know I want to be a lawyer of some manner. I have no idea where, about any of the details, or if I’ll be successful. My health means I’ve taken medical leave and when I go back, I’ll work everything out. I like family law, and I like technology, and academically I’m good at commercial, but where that will take me I’m still unsure. In 2017, during my first ever Foundations of Law lecture, our lecturer listed off some recent statistics from the Solicitors Regulation Authority. Only 3% of all staff in law firms across England and Wales identified as having a disability. The career is a hard push for anyone, but nearly impossible for someone living with disability, and this has been held over my head since I started this journey. The week before I was admitted into hospital for nearly two months I knew I was getting sick. The weight was dropping off in front of me, I couldn’t walk around campus, and I was being uncontrollably sick. Something was wrong. I sat with my (now ex) boyfriend outside the university library on a cold night, and I can’t remember if I cried or I was just thinking about crying, but I was deeply upset and frustrated by what my disability has taken away from me. My friends and peers all have a good idea of where they’re going in life, many have offers of vacation schemes this year or even their traineeship already. These people are all able to commit to the ungodly long hours and sacrifice it all for a high flying career. This isn’t just the case for people with disability: a friend who is a mature student with young children also would not be able to make this intense commitment, but for many reasons relating to my disability I… Can’t. I might not be able to make it into work early in the morning, I might have to leave before the end of the day if I feel unwell, I might need to use adapted equipment, it might take me slightly longer than my peers to read a document. I can’t leave the office at night and spend hours doing research in the same way as everyone else will be able to. I need time off for my appointments. Not only this, application processes are not designed for disabled people. Psychometric tests are inaccessible, the Watson Glaser is laughable, and an assessment centre or interview is not a scenario that has been designed with disabled people in mind. Quiet rooms are non-existent, there probably isn’t a disabled toilet on the same floor, and filling a room full of anxious but self-assured, polished students is a recipe for disaster when some may have a disability but cannot fully express it. In 2019 it was revealed by law firm Bolt Burdon Kemp that Human Resources and Recruitment departments were the least knowledgeable sectors of disability needs and rights. Only 20% of Law Firms have a diversity policy that actively includes an action plan to promote disability. 

And this isn’t something that is going unaddressed: law firms, at least the few I’ve completed the application process for, ask if you have any additional requirements, and will offer it to the best of their ability. But still, assessment centres, interviews, and the like are assessed against ablebodied, neurotypical students- and the bias against disabled candidates is still clear. In 2018 Leonard Cheshire, one of the largest disability charities in the UK, found that 66% of Employers saw the costs of workplace adjustments for disabled people as a barrier to employment. This thought will remain in graduate recruitment minds, and often results in someone who doesn’t need these costly adjustments being offered the role, even though both candidates have the same qualification, skills and ability.

So, the assessment centre specifically for disabled people? I absolutely really truly loved it.

We were told what was expected of us, what they were looking for in our answers, shown around the building. They reassured us that nothing was supposed to trip us up. If we needed to work in a smaller group, we were allowed to work in a smaller group. There was fidgets available, a quiet room, and we were not assessed between tasks. Oh, and it was led by a disabled person.

Absolutely brilliant.

Nobody asked about what was wrong with us. We spoke about our conditions if we were comfortable. The other candidates felt strangely like ‘my people’- we could all relate to one another, we laughed and had fun and spoke about shared experience with hospitals, disability services, and professional careers.

The whole thing focused on what we could do, how we were capable of a professional career, none of us had to panic that we were competing with one another, that the person sitting next to us was whole and perfect and polished. We were all polished, whether than be with a feeding tube or cochlear implants, or a guide dog. Our point of conversation was not ‘so, why is that tube on your face?’ it was ‘so, why choose law/history/classics’?

I have never been in an environment that makes me feel secure in my ability as a young wannabe-professional. Regardless of whether I was successful in being placed into a role, I absolutely appreciate not only the thoughtful adjustments, but also the people I met. I came away from the event with friends, despite being spread all over the country, across many different courses, and with all different disabilities. I can’t say if this happens at all assessment centres organised by this organisation, but I’m happy I attended to experience such a supportive and positive environment. It was stressful, yes, but there was no mistaking that we all felt the same way. There was no bravado, no ‘well, I was published five times this year and my dissertation was graded highest in the year’. All of us had been affected by our disability, we have all taken that huge knock to our confidence. But this wasn’t a support group to lament on what we have all lost- it was a hopeful and inspiring look into what our futures hold for us as capable individuals. I believe that this environment, and possibly the internships offered (though my hopes are not up so that I avoid disappointment if I fail), has been incredibly beneficial.

There needs to be more supportive professional development for disabled students.

There needs to be more disabled only space, that is positive.

There needs to be more accessibility.

We are getting there. 

And I am so appreciative. 

Leanne-Sydonie x

Sources:

https://www.recruiter.co.uk/news/2019/07/understand-rights-workers-disabilities-and-get-grips-equality-act

https://www.leonardcheshire.org/about-us/facts-and-figures

https://www.sra.org.uk/solicitors/resources/diversity-toolkit/disability/