Wednesday, 31 August 2011

A box ticking exercise?

I ticked a box today.  But it was not just a box, it was a categorisation that challenged my perception of myself and my condition (again!).  I was applying for a job, and came to the inevitable 'Do you have a disability as defined by the Disability Discrimination Act?' (ie ‘A physical or mental impairment which has a substantial and long term adverse effect on a person’s ability to carry out normal day to day activities. The disability could be physical, sensory or mental and must be expected to last at least 12 months’).*  This was the first time I have encountered this question since I established that my condition was not 'just' a post-partum thing, and since I had my really bad flare earlier this year.  It was therefore the first time I have had to consider whether I am 'disabled' according to the definition of the Act.

Now I understand the theory of why employers need to know this, and that it is beneficial to all parties to declare it, but I really wasn't sure whether I was 'disabled enough' to qualify.  I suspected that people I would normally turn to to chew over an issue like this might come back with a 'don't be so silly, of course you're not' response, so I decided to ask the people with first hand experience and posted a question to the #rheum and #spoonie communities on Twitter:

'A question for UK #spoonie #rheum folk - at what stage did/would you regard your #arthritis as a disability under the terms of the DDA?'

And as usual, Twitter came through for me.  In the space of that golden first hour, I had received some excellent and very sound advice from a number of experienced people, and it completely turned my mindset around.  I'd like to share some of the advice I received:

'You need to declare it, because it's in your interest. They [the employer] need to supply reasonable adjustments... '

'Talk to Access to Work at job centre, or @arthritis_care They should be able to give you advice on working with arthritis, and suggest adjustments that could help.'

'You won't get any medals for "struggling on" but will do a good job with the support you need'

'Look at it not as disabled rather differently abled. Just means you need to find ways around things...'

'the various aids (plus colleagues knowing I needed help) kept me at work for longer'

'Very worth while getting an AtoW [Access to Work] assessment, they will tell you things you never noticed before'
'Have you tried using our [Arthritis Care's] forum? There's a section on working with arthritis'
I also found some typically sound and clear advice from Arthritis Care on Applying for Jobs.

It became clear to me as I digested and responded to all this advice, that the part of me that was saying 'but I'm not *that* disabled' was motivated by an unholy combination of pride and reserve.  I reasoned that as I have already overcome my self-consciousness enough to use a stick when I need to, I should be able to make the further leap required here and overcome the urge to say 'I'm fine, I can manage' when I could be making life a lot easier for myself (and others).  I saw that there was no point in trying to second guess how my disease might progress over the next year, or what effect a new working arrangement might have on me over time.  The fact of the matter is that I have an ongoing, fluctuating condition.  My day-to-day functioning is compromised in a number of ways, and is likely to continue to be so to a greater or lesser extent.  That is what the Guidance Relating to the Definition of Disability (available to download from Direct Gov) describes, and that is all that matters in this scenario.  In fact, the guidance has some good examples relating specifically to Rheumatoid Arthritis, and ongoing pain and fatigue.

So in the space of about an hour, my attitude was transformed.  It became very clear to me that I should be ticking that box.  I am actually quite excited by the prospect of 'coming out' as disabled, and I look forward to seeing what Access to Work have to offer!

* I realise this text is out of date now the Equality Act 2010 is in force, and I'll mention it to them


  1. Good for you! Hurrah! =) This is a huge step! (And yay for our Spoonie friends for being there for you too!)

    I remember when I made a similar realization. The best thing that happened was that I realized to the core of my being that I had to take care of myself differently. I needed to treat myself like I was sick, even when I felt good. That led to me having more and more good days. Now, I can mostly live like I don't have fibro... but it started with me realizing that I was sick. =)

  2. thank you so much for this article. It is very helpful and informative.

  3. Also, it was like reading about myself and what obstacles I have created for myself fighting the label 'disabled'. I could so relate to this article, and felt a feeling of comfort that I am not alone in these feelings. Thank you.....

  4. Great blog. I had exactly the same experience when I was 25. I ave had RA since I was two. Although I spent many a hour/week/month in hospital having various treatments etc throughout my life, I never grew up thinking or feeling 'disabled'. This probably came from the fact that my parents encouraged me to join in with everything I could.

    When i went to uni I didn't tell anyone because I was feeling good and didn't see or feel the need to tell people about my medical history.

    After uni I continued to go for it in work and play, not telling anyone about my arthritis (unless a overly noisy question popped-up). When I was 25 I got a new job in PR and moved to London. Again I didn't mention it to my employees. I caught tonsillitis in my first week in the job, from someone in my team. I already had glandular fever but had no idea.

    I had a massive flare and ended up being rushed to hospital. To cut a long story short - my employees didn't take me back because they said that I hadn't been honest about my condition from the start.

    My Dr gave me a talking to and said that it was basically time for me to wake-up and smell the coffee. I needed to take care of myself and admit that I had this condition.

    The social worker in the hospital (although intensely annoying and patronising as per) really made me think. She told me that there are millions of people out there that claim but have no difficulties - she told me that there was all this help that I could and should use to make my life easier so that I can still have fun and live a normal life without putting so much strain on my body. When she told me I could get a cleaner that won it for me!!

    Another big thing that changed was admitting that I had a disability (of sorts). I am still not happy with the term but it makes people listen to what you need when in a working environment.

    Unfortunately, people don't understand arthritis and why one day you can walk for ten minutes and the next day you can't move at all. So telling someone that you have a disability is enough. They don't ask any other questions but they are careful to treat you well at work.

    In my view, it's how and when you use the word. I don't band it around but if I need help i.e a parking space, to use the lift, to get seating tickets at a concert etc then I use it. It still makes me feel nauseas but I guess that if I have to put up with this shitty disease then I am going to get all the rewards I can in life!

  5. Thanks for the appreciation and support, and particular thanks to Mighty Mouse for laying it on the line like that! That must have been an incredibly tough experience, and there but for the grace of God, as they say... I have to say the possibility of a cleaner would swing it for me too! *hatches evil plan to claim what she is entitled to*

  6. Like yourself i have RA amongst other things and i used to tick box's but never got interview then one day did not tick box hey presto got interview

  7. Sadly for many ticking that box means only one thing, NO chance of even being considered for the job applied for. I too have arthritis and while many employers will consider employing me and making adaptations where necessary, I also have Epilepsy which is still even in the 21st Century a misundderstood condition that frightens many people mainly through their ignorance of the condition.

  8. I'd be lying if I said that concern had not passed through my mind too, and I'm very sorry to hear of your experience. Indeed these issues are one reason I have not used my real identity in my blog. I agree that ignorance is a huge issue, and I see that I'm at the beginning of an ongoing process of helping family, friends and colleagues to understand better. It has been a bumpy road, but I think I'm getting better at it.

  9. Anonymous said
    'Sadly for many ticking that box means only one thing, NO chance of even being considered for the job applied for. I too have arthritis and while many employers will consider employing me and making adaptations where necessary, I also have Epilepsy which is still even in the 21st Century a misundderstood condition that frightens many people mainly through their ignorance of the condition.'

    i would have to disagree with you on this I'm afraid. I worked at the BBC for 8 years. I am an accessibility specialist and work with people who have disabilities all the time. The BBC is a great employer for people with dsabilities - look at the Extend scheme they run every year. That's how I got my job with them. They are keen to employ disabled people and are keen to help as much as possible.

    If you feel that you have not been given a job due to your disabilities then you have every right to use the law. That is what the Equality Act is all about. It is there to support people that are being discriminated against.

    There is no point assuming that if you tick that box you will not get the job. I had long discussions about this with a clients recently because I was worried that the reason for asking that question on their jobs website was to pick people out - but in fact the reasons are usually the opposite.

    Organisations want to employ people like you and I if we have the skills for the job and so they are trying to track how many disabled people are applying and if not why not etc.

    Finally, again when I worked at the BBC I worked with a person with an number of conditions including epilepsy. At one point he did fit quite frequently in the office. All I can say is that I was very proud to work there because his colleagues were amazing, not patronising in any way and didn't mention it as a big deal at all.

    Please don't lose hope :)

  10. Thanks again, Mighty Mouse, for bringing the benefit of your professional experience to this discussion and showing how organisations can and should approach the issue of disability! It's a very positive story, and one that should give us all hope :)