Just over 12 years ago I received a bit of a bombshell when I was diagnosed with Multiple Sclerosis. I say ‘bit’ because to be honest I knew the diagnosis was coming as I had recently lost all sensation from the neck down (that was not a particularly fun month). Accepting my condition was in truth the relatively easy part being able or willing to openly share with other people was much more challenging.
MS affects different people in different ways and for me this reflects a challenge inherent in our wider thinking about disability. Following my diagnosis, I became increasingly aware that as a nation we have a fixation on almost limiting our thoughts on disability to mobility. Despite this, we have failed to really address the barriers and limitations that we put in place for people with a mobility disability. At the same time, we fail to acknowledge the fact that disability is a much broader subject.
I have received unhelpful disapproving glares when compelled to use an accessible toilet. Felt ‘pressured’ into relinquishing my seat on public transport on days when I really needed a rest. Been scared to reveal my condition despite the fact it is under control and I am actually managing it rather well. I am conscious that much of this is internalised, but it stems from what I see and experience in the wider world. I actually carry certain perspectives as they were embedded in me before my diagnosis and shaking those off is really difficult. My biggest ongoing inner dialogue – “is it ok for me to use an accessible toilet”.
So how do we move forward? We need to have more open dialogue about disability. In my mind it is the way we have historically set things up that is the problem. In some ways I am pleased that the sunflower lanyard scheme is trying to help highlight that some of us may have ‘invisible’ disabilities but at the same time it is a bit depressing having to wear what equates to a giant badge publicly declaring there is more to me than meets the eye.
As an example of one thing we could change almost immediately. Why can’t job application forms state these are the adjustments we currently have in place as standard would any of these be of use to you and then go on to ask if there are any further or additional adjustments you would need? It’s a simple change but for me it reframes the conversation and suggests an organisation that wants me to perform at my best. I have seen some other organisations recently giving out the questions half an hour before the interview to enable a candidate to gather their thoughts and be their best self. As someone who occasionally struggles with ‘brain fog’ this would be an enormous help.
I would love to hear from others about positive steps you have seen or experienced. I am interested and curious to know what are the changes we could make to help you feel a greater sense of welcome and belonging? Please leave your reflections below, let’s keep them constructive and map out the positive shifts we could support to make meaningful and lasting change.
This will take some effort from all of us but #ImNotTired.
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Those days were golden
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