Thursday, 19 May 2016

I Can Make It Case Study: Carrie Boyce



We at I Can Make It are always on the lookout for young people with disabilities or long term health conditions who want to share their success stories with us when it comes to navigating the obstacles in the path to employment. Before her star turn in her recent “I Can Make It Presents” video,  Carrie Boyce wrote this interesting story of how having been diagnosed with severe dermatomyositis early in her career, she ‘swam  for the music that saved her ΚΌ all the way to the Royal Society of Chemistry. Carrie the blog space is all yours… 

 
Carrie Boyce

“Swim for the music that saves you when you’re not so sure you’ll survive.” Not just lyrics from my favourite Jack’s Mannequin song, but words I live by every day.

In 2009, 10 months in to my first ‘proper’ job after graduating from university, I was diagnosed with severe dermatomyositis. This rare disease caused my immune system to go into overdrive and start attacking my muscles so that any movement I made was agony. Ultimately, I lost the ability to speak, swallow and lift my head off the pillow. It’s not something you expect when you’re 22, supposedly with your whole life ahead of you.

The trouble with rare diseases is that no one really expects them, or has a clue what you’re on about when you mention you have one. There’s a lot of trial and error involved in treatment and recovery and that can be frustrating to say the least.

Perhaps unsurprisingly, I had to stop work and move back home with my parents, spending three months in hospital and eventually undergoing four rounds of chemotherapy to bring the condition under control. For a while it was unclear if I’d pull through - while I wasn’t immediately on death’s door, I was certainly crawling up his driveway. What followed was 12 months of physiotherapy and rehabilitation to regain my strength, mobility and independence.

At the point where I felt ready to return to work, I tested myself with a part time job in retail. After a few months of coping fine, I considered my next steps. Having to quit my first job meant I never received closure with that role, so when a similar position opened up I jumped at the opportunity to return to my old life. This role came with a little added responsibility, and allowed me to move back to a city I knew well. The familiarity allowed me to regain my independence and confidence in a safe and supportive environment.

To look at me now you wouldn’t know anything was wrong. In part this is because I work really hard to stay healthy but my condition is also managed with regular medication. In saying that, I still go through periods of exhaustion, colds affect me more than the average person and quite often I feel stiff and sore. Having dermatomyositis isn’t an obvious disability, and as a rare and chronic condition it’s hard for people to understand or relate to it. It has forced me to reconsider my career prospects and priorities in life. I’ll never make it working long hours in the city, for example, but it turns out – that’s ok. I was worried I’d struggle to find gainful employment after my recovery but I’ve been really fortunate with my employers to date. After a bit of explanation and context from my doctors they have given me flexibility in my working hours, allowed me to work from home when I need to and take leave for regular blood tests and hospital appointments.

Currently, I work for the Royal Society of Chemistry, widening participation and increasing public engagement with the sciences. The job involves a lot of project and events management, communications and stakeholder engagement. I love it.

If I were to give three pieces of advice to anyone returning to work with a disability it would be: Be patient with yourself. Be kind to yourself. And never, ever stop swimming.

Carrie Boyce
Outreach Executive, Royal Society of Chemistry 

If you’re disabled, aged 18-29 and have a story that you’d like to share with us about overcoming barriers to employment, then please get in touch with Leo Capella via leo.capella@disabilityrightsuk.org.
 




 

Sunday, 20 March 2016

Now let’s have the debate



Finally disability benefits are high on the political agenda – so where next?


When the Daily Telegraph, just over a week ago, carried a front page article critiquing proposed cuts to Personal Independence Payment, something was afoot. It was, as we saw over the next few days, a sign that various political agendas were beginning to be played out. 

But after a tumultuous week in politics, for disabled people two things stand out. First, Government has back-tracked on the plan to restrict eligibility for PIP: this is an immediate win for the disability movement, which all campaigners should take a moment to celebrate. Tireless campaigning against a succession of unfair policies has finally brought a result (though we must keep a watchful eye on what next). 

Second, there is - at last - a high profile public debate on disability policy. Finally some public figures are saying – as we have said for years – that policy must be driven by a real commitment to what works in the lives of people living with health conditions or disability. This goes beyond the immediate debate on PIP: we want investment in participation, not short-term cuts that cause misery and are counter-productive, actually increasing spending long-term.

This may offer us an opportunity. Disability Rights UK alone had opportunities to speak in the mass media that are usually monumentally hard to obtain – because disability is generally just not seen as front page news. Last week we were interviewed or quoted on the main TV news on BBC, ITV, Channel 4, Channel 5; the Today Programme, PM Programme and Radio 5 Live; the Mirror, the Independent, the Times, the Telegraph, the Guardian – as well as many local radio and print media. And other campaigners and organisations were quoted too – including members of the Disability Benefits Consortium, who led on great analysis of the numbers behind the government’s proposals.

This story was not squeezed into a social affairs niche by the media – but given centre stage. And gradually interest spread further and further beyond the usual disability commentators: we had inquiries from people including Rory Bremner, it was covered on the Last Leg, comedians like Chris Addison were tweeting about it…..

We have a new Secretary of State for Work and Pensions, Stephen Crabb, and we urge him to start a direct discussion with disabled people, our organisations, and policy experts – to forge a policy direction that supports our independent living and our opportunities.

For this is how we need to frame the debate: in terms of independent living and opportunity. One downside of the high profile debate this week has been that some of it has focused on the need to ‘protect’ the ‘most vulnerable’. These are not the concepts we need. 

Firstly, because we want independent living and full participation in society – with support where needed to achieve that; we don’t want to be ‘protected’, viewed as ‘vulnerable’ and helpless, which merely compounds the sense that disabled people are pretty incompetent. And secondly, because the rhetoric about looking after the ‘most vulnerable’ usually means targeting resources only at a small number – which throws out of the window the concept of equality. 

If I am not the ‘most vulnerable’ but with some support (like PIP, or Access to Work, or Disabled Students’ Allowance) can achieve more equal life chances with others then I fundamentally deserve that support as a matter of equality. It enables people to get out and about, escape social isolation, perhaps get qualifications: to achieve independent living.

So we should reject the language of ‘vulnerability’ and talk instead about support for independent living and opportunity to use our talents to contribute to our communities.

And we are ready to talk with politicians of all parties on what WOULD support our independent living – bringing people living with a wide range of health conditions and impairments into a debate to set a better forward direction. A long-term plan for independent living and equality would be good for individuals, for families and for the whole of society. The time for serious discussion about how to achieve that is now. 


Liz Sayce

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