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What I’m hiding as a disabled working person

RamRam Posts: 35Member Pioneering

Ruth is a secondary school English teacher with cerebral palsy and Perthes’ Disease, a condition that affects her hip and during National Inclusion Week, she speaks to us about working as a disabled person.

What I thought that I was going to write about when I began this was how my teaching job has changed for me since I acquired my crutches and wheelchair. There is certainly a lot to say about that, how it was so strange to leave work on a Friday without them and arrive the following Monday a fully paid up member of the mobility aid community, how liberating it can be to wheel around corridors without the energy-sapping pain of walking, how frustrating to encounter heavy doors, poor ramp design and to negotiate those essential reasonable adjustments without feeling as if I am making a public admission of professional failure.

Before that Monday in May, I liked to flatter myself that my impairments were mostly hidden. My gait probably invited speculation but the other things, scoliosis, replacement hip, pain, rubbish spatial awareness were mine to talk about, if I chose to, and I usually didn’t. And what I have realised is that, even though my disability is now more visible, the not talking bit hasn’t really changed. Of course my chair announces itself. Wherever I go, I will be remembered, no longer any chance of getting away with crime, always a representative. Sometimes I relish that, particularly at school where, on a good day, I can confound expectation by opening that heavy door with a flourish or simply by smiling whilst wheeling. I also sometimes long for those pre-wheelchair days where I could go about my business incognito and not feel the pressure to be such a shining example. More than anywhere else, at work, I just need to be able to get on with my day.


What I have also realised is that, however obvious some aspects of my impairment now are, there will always be a lot that is concealed. I talk for a living but it’s not so easy to explain to others the impact of pain and fatigue, how planned, and paced, my existence has to be, that I am not choosing to walk one day, and not the next and that I am always just a little bit scared that I will fail at the carefully coordinated juggling act that is my working week, just because of some seemingly inconsequential change over which I will, most likely, have no control. That it will happen because nobody thought to include me in a crucial discussion.

Since my wheelchair, the greatest alteration to my working life stems from the reality that I have joined a minority and a discriminated against, often-unrecognised, one at that. I am not particularly angry about my physical state, but I am frequently incandescent with rage about how disabled people are treated, about poor access and thoughtless decision-making by those who, whilst understanding very little, are convinced that they know what is best.

A couple of years ago I visited Franklin Roosevelt’s house and it is a place that speaks volumes about what it means to be a working disabled person. It shouldn’t, because he was one of the most powerful people on the planet, died in April 1945 and, by now, much more should have changed. He concealed the impact of his polio lest people doubt his leadership ability. There is only a handful of photos of him using his wheelchair, he pushed himself to his physical limits swimming, using crutches, hauling himself upstairs, rather than having a lift installed, so that he built the muscles to deliver his speeches standing.  His wheelchair was his own design because none existed that would let him live his life at the pace needed for his work. The integrated ash-tray was, on reflection, a little ill-judged, but I applaud his urge to personalise.

And so if I could say just one thing to employers, in fact to anybody who has a disabled colleague and wants to know how to help them? Try asking them what they need but, before you do, be absolutely certain that you are prepared to really listen to their answer.

As part of our campaign Disability Gamechanger, we found that half of all disabled people feel excluded from society, including in the workplace. Watch our latest video below.


Has your impairment affected your career? Have you felt excluded from employment due to being a disabled person? How can employers be more inclusive? How can we drive inclusion in the workplace? Please share your thoughts and comments below.

Replies

  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    You are such an inspiration and rocking those hair bunches!
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Zebra88Zebra88 Posts: 55Member Courageous
    Yes! I recently worked within the civil service and went from starting the job being able to walk around, to needing to use a wheelchair as my illness progressed. I was always asked what adjustments I needed but felt like none of them were really taken seriously to the point where it was affecting my health so much that I left. I completely agree with asking disabled people what help they need but actually being prepared to listen! That's the most important part. I felt like during my employment they were just ticking boxes by doing 4 DSE assessments on me in 6 months but not actually following up any of the recommendations. I would get an email asking how we could overcome a certain problem and then when I offered solution nobody was willing to help to achieve it. Thoughtless things would get to me. For instance throwing away the only kettle we had because there was no PAT test, without taking into consideration that the water boiler was at face high for me in a wheelchair and boiling water would splash me in the face. I had to apply for my own kettle and felt like I was kicking up a fuss over something hundreds of other colleagues tool for granted. I believe in the Social Model of Disability and there are too many examples to list as a working disabled person. Love this post!
  • RamRam Posts: 35Member Pioneering
    Glad you liked it. I love hearing from people who have had a similar experience to me but it's frustrating that you have too. So many adjustments are simple and I wonder if reluctantance to make them stems from a pervasive attitude that disabled people are trying to get away with something and are also 'adult children'. The mental toll of having needs ignored is often underestimated.
  • JudeHJudeH Posts: 2Member Listener
    Love this topic Ruth. 
    I work for the NHS, surposed to be the caring profession🤔. I have lupus which brings with it lots of pain and fatigue which I agree you just can't explain deeply enough, my colleges say they are feeling tired and I wonder if they truly understand the meaning of tired, when you hit that wall that you can't penetrate by any other way but to try to sleep, but your so tired getting to sleep is hell, but once you are asleep you sleep 24hrs straight. I dont think they have the faintest idea.
    I walked with a stick for some time because of the lupus but could not do my job easily with my stick so I didnt use it during the day at work, I'd walk in to work with it then walk out of work with it and after all shift without it I couldn't wait for home time to use it again, colleges would ask why does she use a stick if she can manage all day without, they had no concept that I struggled through the shift and couldn't wait to get back on that stick at the end of the shift with raging pain and fatigue justctovtrycand hold down a job and keep paying the mortgage and keep my family afloat financial. 
     Then I fell down the stairs and fractured my spine, but they said it wasnt fractured at first, so I walked round for 2 years in even more pain till I was numb from my waist down one morning, then they said oh dear your back was fractured after all. I then had to have major spinal reconstruction, 12months off, and returned to work with now 2 sticks and a mobility scooter for distance. I have had to change my role and move departments. They provided an up down desk and a personolized chair but getting through heavy nhs fire doors is so hard. Our occupational health department is up a steep slope that's not regulation gradient with the most awkward 3 doors to get through at the top. Once in the department, its corridor is only just wide enough for my scooter and I block of anyone passing, truly ridicules for an occupational health department to be virtually inaccessible.
    Working with visible disability is tough enough, add in those hidden disabilities and relevant symptoms and its truly a cocktail for only the most strong willed of us worriers to battle through.

    My Admiration goes out to all those dissability worriers, out there, be it visible and hidden. 


  • RamRam Posts: 35Member Pioneering
    This seems like an important topic for lots of disabled people. I completely agree about having to struggle with the built environment. I frequently have to make 'choices' about crutches or wheelchair based on accessibility, not what my body ideally needs. I wish there was a requirement to try things out with mobility equipment.
  • tamidavistamidavis Posts: 14Member Connected
    Hi @Ram

    This was an amazing read and I would just like to personally thank you for writing this and contributing to Scope in such a eye-opening way!

    Best,
    Tami
  • RamRam Posts: 35Member Pioneering
    Thanks so much @tamidavis for your comments. The 
  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    I didn’t tell my Line manager until I needed to about my health issues as the occupational health department passed me as fit to work and is confidential. I have to build up trust in people before I can tell them if it’s appropriate or necessary as I fear being treated differently. This has always been a sensitive spot for me and when I did tell her she was good. However, I’m on a temp contract and I worry whether it will be renewed in March as it crosses my mind that I can be let go much easier. I don’t tell my colleagues about my health issues as there is no need to and I dong trust them not to gossip. Not everyone understands and you earn my trust before I will tell you. I have had reasonable adjustments made after sickness absense which was not related to my issues but was clarified anyway. I was recently offered a slight increase in my hours so I do worry unnecessarily at times about my own worth in the workplace. 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • CraftyvixCraftyvix Posts: 1Member Listener
    My disability is hidden from most of my patients. Some of my workmates are still unaware of how it can affect me. I successfully work 3 and a half days a week but often can't function on my days off. I recently had a patient who uses a wheelchair suggest our workplace discriminated against disabled people because our desk does not have a lowered section due to the size of the room. We take paperwork to her and I make an effort to arrange the surgery to accomodate her needs. She was actually stunned that I was disabled as well. There are several people that have the same condition as me and we often chat about it. They often need specialist care. It can be very upsetting to see them when they are physically deteriorating. I worry it will be next.
  • RamRam Posts: 35Member Pioneering
    I think those 'recovery days' can be difficult to cope with. It's hard not to feel like they are wasted time even though they are so necessary.
  • RamRam Posts: 35Member Pioneering
    Deciding what to share with people at work is a really tough decision.
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