Interview with Martyn Sibley
If you are younger than 20 and have a disability, the chances are your family will assist you getting out of bed, with showering, getting dressed and so on. Whilst you may have worries around getting to tonight’s party and which exams that you need to study for, you might have a few other questions about your care and the future. Martyn Sibley has type 2 SMA, uses an electric wheelchair and lives independently in London. He has written the following to answer some of these questions.
When did you first have care from someone other than a family member?
From around the age of 10 I did have someone from a local agency come into the house and help me get my bath. It was good that my Mum and Dad could have rest or spend some time with my sister, but I didn’t really like having a stranger help me with something so private.
We understand that you lived away from home to study at study at university, can you tell us a little more please?
Sure. Having studied for my GCSEs and A-levels, I knew I wanted to study for a degree. Also approaching 19 I was finding it more difficult to rely on my parents to care for me when I wanted to go partying later at night, and sleep in the morning. I think Mum and Dad were finding it harder to care for me too, they were not getting younger either.
Even though going to university was right for me, it was very scary. I had to speak with my social worker to assess my care needs. They then gave me an amount of money to spend on personal care assistants for me.
I remember when my mum and dad left me alone that first night. There were four people who would carry out my care, including turning me at night. I had to be confident and explain to them what I needed, when I needed it and how they should exactly do it.
Sounds quite scary, do you think it was worthwhile?
Absolutely yes! Even though the first few days were hard, I had to remember the assistants wanted to look after me and I was where I wanted to be, university. Even if I didn’t study, I would recommend living independently. All of my friends were moving on, so I am glad I didn’t get left behind just because of my disability.
I would encourage anyone to make this step, if it’s what they want generally. Do not be put off because of your additional needs.
What has happened since your studies?
Having graduated with a 2:1 in economics and a Masters in Marketing, I did same travelling (including Australia) and learnt to drive. Since then I have moved to my own flat in London, worked with the national charity Scope and now run a social enterprise that hopefully empowers disabled people to achieve their dreams!
I have gone from my parents doing care, to disliking agency staff helping once a week, to living in university halls and finally to employing my own assistants. This is what is known as ‘personalisation’, where you manage your own finances and care.
My local authority in London assessed my needs and allocated me the money, as before. However I had to advertise, interview and train them myself. I also have to pay them each month, make the rota so they know when to work, and generally make sure they enjoy their job with me.
Sometimes it is hard, but as long as you know the responsibilities beforehand it’s OK. There are organisations to support me and my family help with the paperwork too. I wouldn’t change it for the world because I can work, meet friends, sleep and eat whenever I want to.
For more information check Martyn’s blog- www.martynsibley.com or e-mail him at .
