Tag Archives: invisible impairment

“You do not need to be in a wheelchair to be disabled!”

Guest blog from Fi Munro. Fi has been living positively with stage four ovarian cancer since her diagnosis at the age of 30. 

Since her diagnosis she has personally raised and inspired others to raise thousands of pounds for various charities by sharing her story. As a blogger and campaigner, she strives to improve awareness of ovarian cancer.

She uses a colostomy bag and has recently experienced a number of negative attitudes when using a disabled toilet at London King’s Cross Station.

Okay, I’m getting on my soap box.

I hate, hate, hate the ignorance and stigma around invisible disabilities. Let’s get one thing clear, you do not need to be in a wheelchair to be disabled!

In January 2016 I was diagnosed with stage IV ovarian cancer and then in May 2016 I had a massive operation to remove five organs and a few partial organs. This resulted in me having a colostomy bag, which I’ve talked about at length in a post on my own blog.

One of the main impacts of this is that I need to use a disabled toilet now to ‘sort myself out’ and I even have an awesome universal radar key that opens all disabled toilets with a ‘radar lock’ – handy!

Fiona, a young disabled woman, smiles and poses for a photograph

Are you a doctor?

At the weekend, I was in London Kings Cross Station and before boarding the train I went to use the disabled toilet. Changing a colostomy bag on a moving train is not a pretty sight, especially if you are receiving ongoing cancer treatment. I’ll let you use your imagination!

There were two disabled toilets and both were occupied so I waited. On either side there were lengthy queues to the ‘normal’ male and female toilets. When one of the disabled toilets became free I went to enter and a staff member put their arm in front of me and told me that I couldn’t use it because I’m “not disabled”.

Erm, wait a minute!

Are you a doctor?

More importantly, are you my doctor?

Are you psychic?

Do you have any idea how offensive that presumption is?

I was so upset! In front of a crowd of people I had to explain my situation in detail before I was allowed into the toilet. And, as those of you with a colostomy know, time is precision in these moments!

When I was finally allowed in I locked the door and burst into tears!

It didn’t get better from there either. I came out to ‘tutting’ observers and staff shaking their heads. I was so upset and felt so stigmatised. This needs to change!

Not all disabilities are visible

Fiona, a young disabled woman, smiles with her colostomy bagWe need better public awareness and better staff training. I would like to highlight that I am not so much upset with the member of staff I mentioned – more so the lack of training given to them and also the lack of awareness from the general public around invisible disabilities.

Together we can make a difference and help remove stigma by recognising that not all disabilities are visible.

Please share and help ensure that no one else is made to feel stigmatised.

Thank you!

Love and light, Fi

You can follow Fi on Facebook or read more about her experiences on her blog.

I have dyspraxia, but people tell me I must be drunk – #EndTheAwkward

Guest post by Rosie, who has dyspraxia affecting her movement, balance and sensory processing. She’s supporting our End the Awkward campaign. Here she shares what a typical night out might be like for someone with dyspraxia.

It’s a Saturday evening and I’m off to meet some friends for some drinks. To get there I have to take a train and pass through a busy street.

It takes me a while to get on the train, as I struggle to judge the distance between the platform and the train. As I reach to grab hold of the rail, I can hear people behind me whispering. “Can she just hurry up, what’s she doing?”Portrait shot of Rosie, a young woman with dark hair

The train is packed and I can’t see any spare seats. I can feel myself losing my balance and I bump into people, accidently standing on their feet and hitting them with my bag. “Look where you’re going,” I hear muttered.

I sit down in one of the disabled accessible seats near the train door. The conductor approaches me: “But you don’t look like you’re disabled, why do you need a seat?” I feel so shocked that I spill coins everywhere as I get money out of my purse. “Pay when you get off,” he mutters, disgusted.

I glance at my phone. There are texts from my friends asking where I am. Oh no, I must be running late, and where is this bar again I can’t remember, I’m lost, I can feel my anxiety levels rising, my sensitivity to noise and crowds overwhelming me.

I eventually get to the bar, red faced, the contents of my bag all over the place, anxious and overwhelmed and exhausted. I get a drink, and am still so shaken I trip on a step and spill it down me. “She must be drunk already,” I hear people laugh.

But no, I’m not drunk – I have dyspraxia.

What is dyspraxia?

You can’t easily tell if someone has dyspraxia, and not that many people have heard of it.

It is thought to be caused by a disruption in the way messages from the brain are transmitted to the body. This affects my ability to perform movements in a coordinated way, balance, motor skills and sensory sensitivity. Every person with dyspraxia is affected differently.

Rosie holding a medal, a stadium in the background
Rosie at the Olympic Stadium after finishing a 10k run

It can make it hard to carry out everyday activities, such as riding a bike, handwriting, tying shoelaces or using kitchen equipment. It’s difficult to walk up and down stairs, and I’m prone to falling over. We also can struggle with fatigue and low energy, as it takes our brains longer to process things.

Without proper understanding, people with dyspraxia can be seen as careless, clumsy, and rude – when in reality that’s far from the case.

Don’t judge by appearances

Ignorance, misunderstandings and awkwardness make already difficult situations a lot worse, and make someone with dyspraxia feel anxious and overwhelmed.

To end the awkwardness, people shouldn’t judge based on appearances. You never know if someone has an invisible condition, and you never know who might need that seat on the train. A little bit of patience and kindness can go a long way.

Portrait of Rosie with her boyfriend
Rosie with her boyfriend Matt, ‘who helps sort out the chaos’

And don’t make assumptions about what I can and can’t do. We aren’t stupid or careless; our brains are just wired in a different way, so the way we learn and process information is different.

Although day-to-day life with dyspraxia can be chaotic and frustrating, it also has meant I’m a very determined and resilient person. I am creative and able to see the bigger picture, and the experiences I’ve had have made me more understanding and empathetic of others.

With the right support and understanding, dyspraxia doesn’t have to be a barrier to success and living life to the full.

Rosie blogs on her site Thinking Out of the Box, writing about disability, diversity and creativity. Want to know more about how to End the Awkward? Watch our videos made in partnership with Channel 4.

Lazy? No, just disabled… life with an invisible impairment – #100days100stories

Guest post by Carol, an administration manager from Leeds. Carol has Ehlers-Danlos syndrome, an invisible impairment, and has shared her experiences as part of our 100 Days, 100 Stories campaign. Last year, she worked with us on a film raising awareness of the extra costs disabled people face.Head and shoulder shot of Carol dressed in black

I was once in a lift with a very, very senior manager at a company I used to work for. I was going up one floor, but I needed to take the lift because I struggle to manage the stairs.

I pushed the button, and he looked at me and said: “Only going one floor, are we? Aren’t we lazy?” I smiled and said: “No, just disabled.”

To be fair to him he was mortified, and it made me laugh more than anything else. And he was always extremely considerate of my needs after that. But it struck me that that’s exactly how the world often sees disability.

No middle ground

The assumption seems to be that either you’ve got a wheelchair, or have some other very obvious impairment, or you’re not disabled at all. There’s no middle ground.

It’s present even in the symbols we use. The universal symbol for disabled facilities is a person in a wheelchair, but that’s not necessarily what a disabled person looks like.

I have something called Ehlers-Danlos syndrome hypermobility type, which affects your connective tissues. Among other symptoms, it means your joints are very prone to injury. I have also had something called Perthes’ disease, which means I now have osteoarthritis and need a hip replacement.

I can’t walk very far, I can’t carry heavy things, I get tired very quickly and sometimes my joints partially dislocate.

Sometimes I limp, occasionally I have to use a walking stick, and often I’m wearing joint supports under my clothes, or taking a lot of painkillers. But often, you can’t tell that I am disabled.

People’s reactions

Because I don’t look particularly “disabled”, people are surprised that I need adaptations at home and at work, or that I might have extra requirements.

There have been lots of times where I’ve said something like, “Actually, can we get a taxi because I can’t walk that far?” and had blank looks back in return.

On a good day, I can walk about 160 paces without too much pain. That doesn’t get me even as far as the bus stop, so I’m completely dependent on my car.

I have a blue badge that allows me to park in disabled parking bays, which is an absolute lifesaver, but I’ve had some unpleasant run-ins with people who think I shouldn’t park there.

I get stared and sighed at when I’m climbing out of my car, as people realise I’m not elderly or in a wheelchair. People have literally run out of buildings to tell me to park elsewhere.

I know they’re trying to do the right thing, but it’s an awkward encounter that I could do without – especially since I often can’t get a disabled space because a non-disabled person has used it to pop to the cash machine!

Better support

Social faux pas aside, there are bigger problems with the way society tends to ignore invisible conditions. Because they aren’t there on the surface for everyone to see, it’s very hard to get the right support.

Often, I see doctors who have never heard of Ehlers-Danlos and ask me how to spell it, so it’s no surprise when NHS services struggle to help someone with my condition. I’m prescribed lots of  painkillers, but I can’t drive if I’ve taken them and if I can’t drive, I can’t do much.

I’ve had to change career, partly because my impairment was not supported by past employers. I’ve adapted my lifestyle, my hobbies and my expectations of life.

With a bit of consideration and help I’m capable of working, living independently and making a useful contribution to society – as are many, many people with invisible impairments. With just a bit of extra support and understanding our lives could be so much easier.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.