Hello, dear readers. Today I would like to share some observations with you regarding some public perceptions of disability that I have been exposed to recently. I would like speak about manifestations of some damaging attitudes – both overt and subtle, and note how statements that are intended as compliments can be deeply hurtful.
After my condition worsening suddenly following a couple of months of a three-hour daily commute to a temp job in October, I found myself unable to work outside my home. I did the best thing I could under the circumstances and found myself some freelance work through a website. I usually endeavoured to work around 10 hours a week while lying on my couch with a laptop.
After a long period of fighting through my GP for access to some form of appropriate treatment for my EDS, my referral to a rheumatology physiotherapist finally went through and I was finally given appointments. I started working with a wonderful physio, who actually knew what he was talking about. I have been working with him for a little over a month now, and although he warned me that I was unlikely to see significant change for about three months, he has acknowledged that I do seem to be making quite measurable progress already.
Not long after I began working with him, I received an unexpected phone call from the agency I had worked for previously asking me if I would be interested in 11 hours a week in a receptionist role. After some consideration, I accepted – I was in quite significant financial trouble by that time, and between my new physio routine and the work I had been doing in learning to pace myself, I felt notably better than I had in some time. Despite some significant issues with pain and fatigue, I was pleased to find that I could handle the 11 hours, and even managed to increase it to 22 hours a week after another worker left unexpectedly.
So – first point. I am already thoroughly sick of the adaptations I have asked for regarding my disability being treated as though they were optional, being unreasonable, or signs of a lack of commitment. This is the agency I was working for when I became very unwell, so they have had awareness of my impairments for some time, and I reminded my contact quite thoroughly when he offered me this contract. I have been nothing but clear about my capacities and how much I am able to take on, and yet I am continually pressured to take on more hours and threatened with the loss of the contract if I do not. I have made it clear that I have issues with chronic fatigue, and need to attend NHS medical appointments which have very limited flexibility, and yet it continues.
This is a huge issue because it hits so many of the issues that impact anyone living with a condition where chronic fatigue is an issue. It is almost impossible to convey the experience of chronic fatigue to anyone who has not experienced it. In the past, I have been afflicted so severely that at points I was utterly exhausted and needed literal hours of rest to recover from the effort of stumbling from my bed to my couch. Pacing is an incredibly useful way to learn to regain actual human functionality – but it’s not an easy thing to learn. Ours is a society which glamourises “busyness” and “tiredness”. Working ridiculous hours is seen as “high performance” and “commitment to your job”. Before I broke down with my illness, I worked full time and studied for a law degree while continuously doing unpaid volunteer work for a very demanding hobby. It is incredibly difficult for me to pace; all the doubts and fears I have about being “useless” and “lazy” come constantly to the fore. Pacing is a discipline I have to be constantly conscious of, because, if I don’t, I crash and become unable to function for hours or days. Unwillingness to accept this and putting pressure on me to ignore it is incredibly dangerous for me – particularly as I very much doubt there will be any understanding of the consequences if I do overdo it, crash, and then become unable to work for days or longer.
Secondly – and undoubtedly a linked issue – there is the fact that every time I go out and attempt to live my life as a disabled person, I keep being praised for my “fantastic positive mental attitude”. I have had this repeatedly from taxi drivers – whom I obviously see a lot of due to my limited mobility – and it is no doubt in part because I do make an effort to answer all of the – rather intrusive – questions I am repeatedly asked about my condition quite fully and comprehensively. I am aware that there is very little public awareness or knowledge of EDS out there, so I try to put my feelings that I deserve privacy aside and speak about it quite frankly and fully in the hope that I am educating at least one person about it. Recently, however, I have also noticed the same kind of comments from friends, family members and others, including healthcare professionals and an advisor from my bank.
I like to think that some of this is deserved – despite suffering from depression, I am, frankly, a bit of a stubborn bitch. I don’t like feeling dependant, and I really don’t like to be beaten. So I am determined not to let my life end with my diagnosis, or let it stop me doing pretty much anything I really want to do. YOLO is a stupid battle cry, so I’ve borrowed the better one of “One Life – make it count.”.
But plenty of the associated conversations around these compliments have left me feeling distinctly uncomfortable. Frankly, a great many of them have implied that this “great mental attitude” is better than a cure, and is what the rest of those disabled people need to get back to work and stop being a drag on the rest of us.
You may recognise this attitude from pretty much any piece of literature coming out of the DWP.
Frankly, based on my own personal experiences and those of friends and acquaintances, attitudes are indeed a huge barrier to employment for disabled people. But not the attitudes *of* disabled people. The problematic attitudes are those of employers, institutions, and the public at large.
Throughout my own process of returning to work, I have been deluged with comments along the lines of “but you’re on tons of benefits, right?”, “but the government gives you people jobs whenever you want them, right?” and “but yours is a real disability, so you’ll not have any problems, right?” and utterly dumbfounded looks when I explain that disability benefits are extremely difficult to access and very little more than JSA anyway, that *public sector organisations* claim to guarantee an *interview* to any disabled applicant who meets certain requirements, not a job, and that the PIP assessment process is not decided by a diagnosis, but has repeatedly ruled that people who could push a single button were capable of work and thus due nothing. If general understanding of the situation faced by disabled workers is so lacking, perhaps it makes a little more sense how people continue to perpetuate so many damaging attitudes and myths.
I would never claim that a person’s mental state does not affect either how they feel, or their capacities – I had a very recent experience of how transformative actual hope can be after my first session with my rheumatology physio, the first healthcare worker I had met in nearly three years who had actually heard of my condition and had a coherent plan for actually managing it. It took me nearly two and a half years to get the correct diagnosis for the condition that was destroying my life, and afterwards I was essentially cut loose without any onward referrals or context for services I could access that might help me manage my condition. My GP was willing to help, but – understandably – had no knowledge about the condition. The NHS – and, from what I hear from friends across the pond, the US health system is often worse – has a serious issue with lack of organisation and pathways from diagnosis to accessing treatment. When I was trying to get a diagnosis, the existing pathway that my GP was aware of through NHS literature was out of date and broken, as the rheumatology consultant with the special interest in EDS had retired and his replacement had no interest, and thus had discontinued the service. The wonderful physio I have now been able to access trained with this consultant’s team and is using the results of his work – but I had to find him literally by trawling through the system, finding specific names of specific consultants and departments from Facebook support groups, and then begging my GP to refer me. And I am very lucky to have a cooperative and helpful GP. I know numerous other people whose GPs are far less helpful, and who are thus unable to access services that might concretely improve their condition and their life.
Before I saw this physio, I was desperate, being given increasingly strong painkillers and beginning to despair of ever improving at all. I can speak with very real knowledge of how this could affect your attitudes and your motivation. Endless waiting lists to access services, seeing person after person who has no knowledge of your condition and a only list of cheap suggestions that don’t help you to offer, and the prospect of dealing with employers who treat adaptations that would allow you to access – or to continue to – work as frivolities? These hugely compound the huge barriers that many impairments already put in place.
Frankly – I can understand why extended experience of this could affect anyone’s willingness to keep trying. But – and say it with me now – that attitude is not the barrier in itself, and nor is it formed in a vacuum. It is formed by experience with the systems put in place to help, and with society at large, and thus continual willingness to treat the attitude – not to mention the impairments themselves – as individual problems that the individual alone is responsible for overcoming – is horrendously damaging to all of us, and only continues to fix those barriers ever-more-solidly in place.
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