Why I’m Not Ashamed To Be Disabled

Why I'm not ashamed to be disabled

As I described in my first blog post, I explained how I used to be full of energy. I used to be able to walk for miles at a time, not thinking twice about just popping down to the shops to meet a friend for coffee. My maternity leave was spent between buggy fit classes, baby sensory classes and music classes, walking between each one.

Related: Mummying and M.E. – My M.E. Story

Of course I was tired (everyone is with a baby!) but a good rest sorted me out each time, ready to start a new day.

However last winter, I caught several chest infections, one after another. Each infection sent my asthma haywire. I ended up an inpatient on a respiratory ward before Christmas as the asthma was so out of control.

I haven’t recovered since. 

Why I'm not ashamed to be disabled

Granted, I can now breathe properly, speak in full sentences (something one can’t do in an asthma attack) and am not on endless antibiotics and steroid tablets, but my energy levels have never returned to what they were before. 

Being diagnosed with M.E./CFS (myalgic encephalomyelitis or chronic fatigue syndrome) was the turning point for me. I could start moving forward (metaphorically) in gaining greater control of my day to day life.

Related: Mummying and M.E. – Getting Diagnosed with ME CFS 

Since being diagnosed I have invested in mobility aids to help me get around. It is well documented that pushing yourself beyond one’s limits with M.E. is a recipe for disaster. You can’t just exercise your way out of M.E.  

Related: Mummying and M.E. – Life on Wheels

I didn’t want to end up housebound, or even bed-bound, and I wanted to have some form of independence. I wanted to be able to take our daughter out and about and enjoy my time with her rather than having to parent through the wonders of Mr Tumble and other CBeebies characters all day long.  

I realised only a few months ago that this meant I was now technically disabled. How did I feel about this? It was hard to know at the time. 

The word “disabled” is such a loaded term.

While society has come a long way in terms of history, unfortunately “being disabled” is still not something that people are comfortable with. Many people are not comfortable “admitting” to being disabled. It is seen as meaning you are somehow less productive, less skilful than an able-bodied person. 

But yet the meaning of the word disabled covers an awful lot more people than one would think.

According to the Equality Act 2010, being disabled means:

you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

Equality Act, 2010

Yes of course by the very nature of the definition, being disabled means you find it difficult to do certain things that able-bodied people can do. I’m not going to lie to anyone, living with M.E. alongside other chronic conditions, is not easy. 

But what favours am I doing myself if I deny that this is a disability? What favours am I doing by trying to push through and pretend I’m as able bodied as before? 

Disability is not shameful. It is not something to be ashamed of.  

Disability is not shameful. It is not something to be ashamed of.  

We live in a society where achievement and “doing” is rewarded. We forget that we are human beings, not human doings. This subtle awareness makes us live in this constant go-go-go format. That can’t be healthy for anyone surely? 

Being disabled has given me a whole new lease of life. (Ironic seeing as I have to lie down to rest twice a day!) It has opened my eyes to the wonders of the world and to the joy that one can experience from the smallest of things. 

I can stand up for myself that I couldn’t do before. I know when to say no when my body does not feel it can do something. I can ask for help that I would have been too stubbornly proud to do before. 

Yes of course things are not easy. 

I need help with travelling on public transport. But that’s ok! The help is available, why not use it! 

I use mobility aids, with each one having a different purpose. The manual wheelchair, crutches and rollator are all amazing but require planning. I hire mobility scooters when going out shopping to be able to enjoy the experience and not collapse in exhaustion. 

Related: Mummying and M.E – Shopmobility and other services you need to know about

But this is me now. This is who I am. People ask me “when is it going to get better?” A perfectly valid question but one that I just don’t know the answer to. And I point blank refuse to sit and wait until that moment comes. I refuse to sign up to the “I’ll be happy when…” phrase as if I need to be miserable until I get better. I’m so lucky to be alive, to have a wonderful family and friends, and to have the ability to get out and about, albeit with some assistance. Why be ashamed of that? 

Why I'm not ashamed to be disabled

This is me. I’m disabled and I’m not ashamed of it. 

This is me. I’m disabled and I’m not ashamed of it.

Soph x

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4 thoughts on “Why I’m Not Ashamed To Be Disabled

  1. I have just discovered you through a shared post on Facebook and have just read 3 of your blogs in a row! I am so glad I have found you and am really looking forward to reading more. I have ME and Fibromyalgia (FM diagnosed first). I lead an FM support group and I vlog on YouTube about my experience of living with FM and CFS.
    I will be sharing you with my support group and sharing your blogs on our Facebook page
    THANK YOU!!!

    1. Oh wow thank you so much for your lovely message. So glad you have enjoyed my posts so far. Do send me your links, would love to see your videos! And send me a message via social media and I can share your work too! x

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