This Year's Model
Today I’m sharing something which may not be news to many of you, but when I was a blinkered, borderline in-denial recent-diagnosee (not strictly a word but I hope you get my meaning)… well, back then, it fair blew my mind.
After a relapse a few years back, I had a meeting with the Equalities Officer at our local city council – my employer and I were trying to put some working methods in place which would support me while still giving them the end-results they required.
I was newly diagnosed and still trying to compute my relabeling as a PERSON WITH A DISABILITY. Disabled herself, she picked up that I was feeling a certain amount of shame and inadequacy, and was having trouble adjusting to the new (unknown, unmapped, rocky) path which had been laid in front of me.
So she introduced me to the Models of Disability (not a fruity magazine for discerning adults, obviously).
The Medical or Individual model of disability suggests the disabled person is the problem:
- They’re a burden, needing care, services, additional funding – they take but don’t give.
- They’re passive or dependent – confined to a wheelchair, housebound, etc.
- They can't walk/talk/see/hear/work/climb stairs/read written information/speak.
- They’re an object of pity or sorrow – the recipient of charity, have “special” needs which aren’t met by mainstream services, etc.
- They’re sick or ill – the confusion between illness and a disability is particularly pertinent with regards to MS.
What’s the solution? Change the person to make them fit in.
I was totally living this model at the time – seeing everything in terms of what I couldn’t do or offer, with everything being my fault somehow (I don’t think I’m alone in this... am I?).
The Social Model of Disability, however, places The Disabling Word (and World) at the centre with the barriers outside.
- Inaccessible physical environments – buildings, transport, poor design.
- Prejudices – attitudes, stereotyping, assumptions, etc.
- Information not in accessible formats – including accessible websites, large print, audio, braille, etc.
- Discrimination – e.g. inflexible or unfair systems and organisations.
- Communication barriers – few sign language interpreters, no induction (hearing) loops or alternatives to telephones, assuming everyone communicates in the same way.
The solution this time is REMOVE THE BARRIERS.
Keeping that model in mind has been really useful ever since and it has made me more forceful and open to asking for help when needed.
And that’s the point – far from absolving us of responsibility, it means we have to shout louder and advocate the heck out of our situation.
It doesn’t give us free reign to whine about the symptoms we have. Acting the victim just makes us seem WEAK, which makes it so much easier for people to ignore us.
As you head into MS Awareness Month (interestingly in the UK it’s only a week but then everything is bigger where you are), keep this in mind, stay strong and keep supporting each other.
How do you feel before getting an MRI done?