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How Access to Work helped me to be self employed with a disability

I often go to shake hands with people at business events only to have them recoil .. hopefully not because I'm scary or have some alien-style hands, but because I wear thermoplastic splints on both my thumbs to stop them dislocating!

Although I am quite open about my condition, I haven't really written about the help I have received in managing it, and how much this has affected my ability to run my own business.  Hopefully this post will help to raise awareness of the services that Access to Work provide, and maybe even inspire others with health problems to go for it!

I've been Hypermobile - which means more flexible than normal - ever since I remember, but was only diagnosed when I was studying to be a Physiotherapist and my colleagues pointed out that my excessive joint movements were 'gross' and not normal.  I can touch the floor with flat hands, wobble my kneecaps either side of my knee, dislocate my shoulders and hips .. all the usual party tricks!  I have Hypermobility, which is known by the official term of Ehlers-Danlos Syndrome Type 3.  You can read more about it at the Hypermobility Association.

Being bendy isn't always great!

Although being bendy has its advantages, I started to experience the negative effects a couple of years ago, in the form of severe joint pain, fatigue and exhaustion.  Within a couple of months I went from being a very busy, active 27 year old involved in mountain leadership training, hockey, going to the gym and having a normal life, to being barely able to get out of bed or get up and down my stairs let alone walk to the end of the road or climb a mountain!  I was, for the first time in my life, signed off sick from work, and given strict instructions to rest - do nothing, just rest.  Unfortunately this didn't mean sitting in front of the TV as I have a severely hypermobile coccyx so sitting is also extremely painful at times!

This was absolutely devastating to me, but I was absolutely determined that I wasn't going to give up, let myself get down, or shove my head in the sand and hope it went away.  I decided after much soul searching that full time employment wasn't helping matters, and found a part time job which was much less stressful and in a far better environment.  This also allowed me 2 days a week to dedicate to my business (up to this point I was running it in evenings and weekends).

Support in the workplace

I did a bit of searching around to find information I could pass to my new employer about how they could help me - and what kind of things I would need to help me work at my potential, which is when I came across Access to Work.

Expecting the usual from dealing with government departments, I sent off an email and forgot about it, not even really expecting a reply.  I was astonished to have a call back the next day giving me details of a local contact who was able to arrange a telephone interview to fill out some forms, which happened the next day.  During this call I was struck by the fact that they weren't particularly interested in the intimate details of your medical condition, but more about what your job entailed or required, and what you were struggling with, or needed support to do.

At this point I didn't consider myself as having a disability (and indeed I still struggle with applying this label to myself!) however the lady who I was dealing with explained that disability is simply not being able to do something - which is exactly the situation I was in!

Finding out what could help me

I was visited at my new office by a Physiotherapist and a technology specialist on the same day, so that it didn't take up too much of my time - but still both were mindful to ensure I wasn't overwhelmed or adversely affected by their assessment.

The Physiotherapist looked at my posture and combined with her knowledge of the condition I have and the specifics of my problems, was able to recommend a custom made fully adjustable chair with a coccyx cutout in the memory-foam seatpad (concealed, so you can't see it!), and an electric height-adjustable desk which would allow me to vary between sitting and standing as I needed during the day.

The technology specialist suggested several different keyboard/mouse layouts to minimise strain on my upper body, and also suggested I tried out voice recognition software for long typing work - along with a wireless headset, and a day of training with an expert.  He also recommneded an aide to my (lack of) willpower - RSI Guard - which reminds you to take, and enforces, micro breaks and rest breaks.  I now use a linux equivalent called WorkRave.

How has it helped?

I cannot begin to explain the difference that this has made.  Previously I could tolerate sitting for no more than 1 hour on a good day, and now I can sit for an entire day (taking rest breaks regularly of course!) without a thought.  I used to get shoulder and neck ache after long stints of typing, but now I am able to use my voice to dictate long documents.  I am able to adjust the tilt and height of my keyboard if I am having problems with my hands - and the left and right side are separate, so I can set each at its own height.

Without the support from Access to Work, I honestly don't think I would even be working right now, let alone running my own business!  Working in technology I have to spend a large amount of my day at the computer, but the input I have received has made this possible, and has ensured that my condition is not made any worse by my computer use.

Where do you start?

If you're interested in finding out more about Access to Work you can read more about it here - if you're self employed or starting a new job, presently the cost of the kit you need is fully funded (I sincerely hope this continues), and there's a sliding scale based on how long you've been working for your employer if this is not the case.  If you'd like to talk to me directly about Access to Work or any of the content of this blog post, please use the contact us form above.

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I am the owner and Director of Virya Technologies, with the responsibility for leading the website design team.

I am primarily involved with the day to day management of our website projects, ongoing support contracts and liaising with our clients from across the world.

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