This week I was invited to attend a workshop on independence in MS in London. The irony of this was not lost on me as I contemplated the mountain of preparations needed to get me to London.
The trains were all over the place as usual, so I ended up getting a taxi from my house in Brighton to the event in Covent Garden! Changing trains and getting replacement bus services is not an option for disabled people so I was grateful my expenses were paid by someone else.
The workshop looked at what independence means for us MSers and we came up with “I” statements to describe how we’d need things to be to maintain our independence.
This got me thinking about how independence is an illusion for many MSers.
There are an army of carers, relatives and friends out there doing all manner of tasks to help maintain this illusion.
In my case, The Husband had to travel with me to get the scooter in and out of the car. He’d already helped me shower, get dressed and had fed me breakfast so I could even leave the house and attend the event.
I solve the problem of not being able to walk by using a mobility scooter to maintain my independence but society isn’t always geared up to wheels. Stairs and large curbs are a constant obstacle for me, preventing me from feeling confident out on my own. Heavy doors and the constant fear my scooter will break down in the middle of crossing the road also terrify me so is my mobility also an illusion? (see the social model of disability )
People often tell me I’m “inspirational” or “amazing” because I turn up to work every day or carry out other tasks people take for granted but it’s the people supporting me who deserve the credit. I can’t do anything without their support and this sometimes terrifies me.
We talked about this at the workshop; the fear of what the future holds with a knackered social care system that no one can depend on long term. What does this mean for the illusion of independence for disable people who may no longer have the support of carers?
The best part of the event was meeting other MSers, their carers and professionals working in the field. It was interesting to hear how we all have similar observations and fears for the future as well as ideas for how things could improve.
Financial independence was a big theme and how maintaining it is hard when working full time is an impossibility for most of us. The baffling benefits system is how many of us will look to survive in future, but this is also creaking at the seams and social stigma prevents many of us applying for what we’re entitled to.
It would be great to hear thoughts from other MSers. What does independence mean to you? How do you maintain your independence and what support do you need? Is it an illusion or can it be achieved?