Cyber-bullying & proud to be a disabled woman.

I have never experienced 'cyber-bullies' until this past weekend.  There can only be one 'blessing' out of it!  I now know exactly what teenagers feel when they are 'cyber-bullied'.  It is horrendous.  Largely because a) it's put on an open site where hundreds can read it b) you don't know the cyber bully c) it's usually vile and scurrilous .  So what happened?

Well I thought I was just arranging a fun Christmas 'do' to gather together likeminded folk to create a small energetic group of non-disabled people with disabled people to find a creative way of having an 'inclusive community'. Having experienced great loneliness in Greystones, my new home, and finding getting around difficult due to geography of Greystones and wheelchair use, and potholes and suchlike, I invited county councillors to consider getting around in a wheelchair. We did a 'walk-a-bout' and  the mayor came to see and it was hugely successful. Then we had a meeting and a little fledgling group started. it's exciting...yes, it's exciting.

I was chuffed. But now it's gone sour in Greystones. I decided to have a Christmas Cake Competition, with prizes and then raffling of cakes and other prizes to raise funds for the group 'DAG:T' 'Disability Action Greystones:Together'. So I did well gathering prizes and excitedly posted this on a Greystones facebook forum...but then female DISABLED 'cyber-bully' launched in.

'Just because you are in a wheelchair...' 'sympathy getting prizes from businesses fraudulently..' 'you piss me off', 'I am not defined by my disability...' etc. etc...   Well, to say I was floored is putting it mildly.  I was not well with tonsillitis over weekend, still have it...with temperature.  It really, really crushed me.  I sobbed for days...but that was her intention.

But now I find she isn't the only Greystones 'bully'.  My neighbour said she overheard school mums discussing 'the twins...not as disabled as they make out' (my twin has same disease as I have), this because sometimes we use wheelchairs, sometimes we walk.  so this obviously means we are not genuine 'disabled twins'.  more upset, more sobbing...

in actual fact even my own older sibling says this with venom. she hates my 'up-front-ness'. So ignorance knows no bounds.

I have simply NOT experienced disability bullying at all.  And it's hard to be ill and using a wheelchair without this shit.

so what's it all about?

firstly I think there is confusion over why some people 'part-time' use a wheelchair, and this is not well understood.  the common perception of 'disability' is you either use one or you don't. using one = disability, not using one = not disability. and I think this perception is enhanced by using the wheelchair logo to denote 'disability' when actually that's only one disability. there are many more. including hidden illnesses like I have.

and the wheelchair symbol says you are disabled if you use a wheelchair, thus implying, you are not if you walk...and people love simplicity.  they don't have to think.

So part-time users of wheelchairs are not well understood.  The reality is, I have muscle myopathy, I cannot stand for any length of time, nor walk very far.  I am exhausted most of the time since my disease 'mitochondrial disorder' means the mitochondria which converts food and oxygen into energy for cells to function is dying. we have mitochondria in EVERY cell in the body.  it's like an energy battery and well I don't have the batteries any more. For myself & twin the mito affected are those dealing with brain and muscles.  Some people have mito affected heart and lungs. but actually mitochondrial disease affects every organ in the body...except blood.

So it's not I can't walk, I can, but not for long and some days are worse than others. so yes, you will see me getting out of the car, going into a shop sometimes and sometimes I'm in the wheelchair. sometimes being in a wheelchair is determined by one practical consideration...a taxi that can take a powered wheelchair.  in my area of Greystones there is only two  and a special company easi-cabs (could be called 'fab-cabs'), but this is a very busy company and you have to book in advance.

my disabled cyber-bully obviously doesn't like how 'up-front' I am about my disability. I shouldn't publically discuss it, shouldn't publically 'flaunt it' she might say...well, all I can say to that is, we all deal with our restrictions differently.

I see no shame in saying I am disabled which means I shake (Parkinsonism), I have dystonia and my back and foot and hand twists and twists  into spasmodic , interesting, contortions, my muscles are degenerating ...like muscular dystrophy, indeed myopathy is like muscular dystrophy, I am in pain from severe degeneration of my spine, spinal arthritis, and I am severely deaf. I take LOADS of pills!

I can wet the bed overnight, I miss the loo and flood my legs and bathroom floor, and no I don't like it, but I am NOT ashamed, nor am I willing to say I'm just like everyone else, I'm not. I'm not like my disabled cyber-bully who says nobly 'I don't let disability define me'.  I don't either, but sure as hell I am a disabled woman...and sure as hell...it's bloody difficult.

So sure as hell, I'm excited to work towards disabled people and non-disabled people coming together in Greystones, excited by the small bunch of good Greystones people meeting together, excited about the Christmas fund-raising and excited about the future and my chosen place of retirement...

yes, I am a disabled woman, living in Greystones...my twin is a disabled woman living in Greystones and only we, living with multiple illness and disability have the right to define ourselves.  and to boot...we are PROUD of still surviving, still here, still creating...

Proud to be a disabled woman. and no cyber-bullying, or negative gossip is going to shake me again.

You know why?    Because I am a DISABLED woman!