Equality – Disability & Lifestyle Blog

The Last 6 Weeks | Disability Battles & Small Wins

May was a funny old month, with slightly schizophrenic weather (is it summer yet?!), and some much needed time to myself.

Since I last blogged in April, I’ve been mostly occupied with life admin and catching up with friends.

The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.

I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).

My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.

Why do they suddenly decide to fail, without warning??

This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.

Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!

Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.

Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!

I will persevere and hope for the best, while maintaining realistic expectations.

On a happier note, May provided some space for myself, as my folks took a little staycation.

People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.

As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!

“Though she be but little, she is fierce”

~ William Shakespeare

My Disabled Body | Muscular Dystrophy

Anyone who knows me will tell you I’m incredibly self-conscious of my disabled body.

I’m much more of a behind-the-scenes presence, and I hate being photographed!

My insecurities have deepened over the years, as my condition (Ullrich congenital muscular dystrophy) has progressed.

My spine is curved significantly in a ‘S’ shape, shortening my torso and causing asymmetry. I am underweight with muscle degeneration, and contractures in all of my joints.

Oh, and I am a ghostly shade of pale!

Being so very slight of stature and a non-ambulatory powered wheelchair-user, clothes are ill-fitting, often uncomfortable and don’t drape well.

Most of the time I feel like a bag of crap!

As a kid, though aware of the physical differences between myself and my peers, I really didn’t care. I was generally happy with a good group of friends.

Me (right) with a primary school friend (left)

Aged 8, sat in my manual wheelchair at school

Me (second from left), aged 9, with primary school friends

On holiday, in my manual wheelchair. Aged approx 12

But, of course, kids (and adults) can be blunt, and, sometimes cruel with their words and observations. As time went on, I was subjected more and more to stares, pointing, judgement and exclusion.

I became a full-time wheelchair-user at the age of 10.

Back then, it was very much a case of ‘suck it up and get on with it, these are the cards you’ve been dealt’.

Looking back, I guess it affected me more than I realised.

My teens were hard. I became increasingly withdrawn, conscious of what I consider my flaws, and constantly compared myself to other girls, wishing I looked like them.

Me, aged approx 17, trying to avoid the camera

Then came the dating years…

Comments such as, “you’re no one’s type” and “no one’s going to want you” massively impacted my self-perception and relationships.

Somewhere along the way, I lost myself and my sense of identity.

Now aged 33, I appear more child-like than womanly. I can honestly say, I’ve never felt sexy, or even attractive, in my entire life!

I’m not body-confident, and I don’t think I ever will be. I still compare myself to others and shy away from people, places and opportunities.

But, I am really trying to accept the fact that there is nothing I can do about my body. It is what it is – unique. I need to make the best of what I do have.

If others don’t like it, that’s absolutely fine, but they can kindly fuck off!

In an attempt to push myself out of hermit mode, I recently ‘dressed up’, took some sour-faced selfies, and posted them on Instagram…

…Excuse the Listerine in the background, haha!

The response was positive, complimentary and sincere. It gave me the confidence to write this post and ‘put myself out there’.

Why? Because I am what I am. I’m not “normal”. But what is “normal”, anyway?

International Women’s Day

To celebrate #InternationalWomensDay, here are some motivational words of wisdom from just a few of the many inspiring women throughout history.

These women advocate equality, inclusion and disability awareness.

Above: Deaf-blind American author and political activist, Helen Keller (1880 – 1968).

Above: Rosa May Billinghurst (1875 – 1953), was a women’s rights activist known as the “cripple suffragette”. She suffered polio as a child and, as a result, was left unable to walk.

What International Women’s Day Means to Me

Light is often shone on independent career women and high-profile personalities; celebrities, public speakers and so-called ‘world changers’.

Of course, these women deserve our respect and applause. But I’d like to also draw attention to the “ordinary” every-woman.

These are the women we are not aware of. We don’t know their names or their stories. These are the women behind the scenes who just get on with life, however challenging.

The single mum’s.

Those living with debilitating conditions and struggle to get out of bed each morning.

Those caring for multiple family members, who don’t have the option to go on holiday or pursue a career.

Women who are relied upon by disabled children and elderly relatives, and have no support or recognition.

Many suffer and struggle in silence. They simply get on with their lives without any fuss or complaint. These women deserve to be celebrated too!

They play a vital role in society – one that takes endurance, tenacity, strength of character and sheer grit. It takes a special kind of person to achieve this.

So remember, you don’t need to change the world to deserve respect and recognition. Being loved unconditionally, appreciated and making a difference to just one person is EVERYTHING!

International Women’s Day 2018

Just a quick post today, to (belatedly) celebrate International Women’s Day 2018.

It is held on 8th March, every year. Here are a few quotes that resonate with me…

What does International Women’s Day mean to you?

This post comes to you a little late, since I spent Thursday 8th March in hospital having an operation – fun, fun!

I’m now on the mend and planning future blog posts.

What topics would you like me to cover?

If you have any ideas or suggestions, I would be grateful if you would leave a comment.

Tag: Equality