Tag Archives: invisible disability

“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.

“Do something you love. Disabled or not, it’s good for the soul!”

Jenny Brownlees is a freelance fashion journalist and stylist. She has ME, and went through a lot of tough times to get where she is now. One thing she found helped her was to follow her creative heart. Here she talks about her experiences.  Jenny on holiday - standing on a balcony with the blue sea behind her

I was 16 when I became unwell. Enjoying life and school, becoming unwell in my teenage years hit me hard. I was very creative both in and outside of school. Happiest in art and textiles classes when doodling, making a mess, sewing, designing, I was obsessed with ‘making’ in all its forms. I loved every aspect of fashion and art. It meant so much to me, and was a huge part of my personal identity.

In the years that followed me falling unwell, I dealt with an ‘invisible illness’, many misdiagnosis’, followed by an 18 month wait for the right diagnosis that was filled with anxiety, panic attacks and depression, as well as feeling so poorly that I can’t even begin to put it into words.

I found I was suffering with ME, and quite severely too. I could list all my symptoms, but I would need the entire content of this blog to do it, so I won’t! After such a long struggle for the right diagnosis came six years of suffering, where I was bedbound for months on end, then housebound for years that seemed to both last a lifetime and pass in minutes. I felt utterly terrible, both physically and mentally.

I, like most had a plan, a path I thought my life would follow; do well in my GCSEs, do well in my AS and A Levels, go to university then get a good job. Easy, right? This didn’t happen as planned, and to say I was devastated would be an understatement. I now write for a living but words fail me when I try to convey my feelings about those years to others.

There is a piece of advice I will always remember from this time, trying to get through a school day I’d forced myself to go into (which as usual had ended up with me having to being taken home.) A lady who was a carer for disabled people, seeing my distress told me “Everyone has their own path. There’s not one right way. You will get to where you want to be, you just might take a different route, and that’s ok.” At the time I found it very hard to believe, now looking back, nearly 10 years later, it sticks with me. Hindsight is a funny thing.

The thing I love most about art, as well as its broad spectrum, is that creativity has no bounds, it can’t be measured. If you make something, in any capacity, you’re an artist.

What you’re creating doesn’t have to be a masterpiece. A love for card making could mean once a week flicking through a craft magazine and thinking about something you may try and make one day, or not! Still, you are engaging in something you love and I think that is a must for everyone, disabled or not. It’s good for the soul!

Photo of a model wearing pressed flower brooches on her coatBeing creative gave me something to get up for. Flicking through a fashion magazine kept me in touch with a world I loved.

My health, I didn’t have. But time, I did. Time I couldn’t use exactly as I wanted, but if I was adaptable and tried to manage my expectations (I’ve always been a perfectionist and hard on myself) I could feel proud of my days ‘work’. Even if it’d been a single scribble on a pen pad. Due to feeling constantly exhausted, I would say things took me double the time but that would be generous, more like five times as long. I read a quote recently that summed this up perfectly: “So what if it takes you ten years, ten years will pass anyway whether you do it or not, so start now.”

I’m not saying it’s easy. The skills I learnt were built upon slowly, over six plus years, and I’m still learning now, but it gave me something other than my own plight to think about! Of course there were days, months even when I did nothing but lie in bed, but as soon as I did have a slither of energy, I tried to put it to good use. Even if you can do a tiny thing each day, a creative hobby, or whatever you love, it can really can give you a sense of purpose and worth.

I began thinking about what I could do with my time. I had always wanted to try photography, I was actually booked onto a course to do it in my free time outside of school, but had to cancel this when I got unwell. Photography was something I could do literally from my bed, I would photograph objects in my room at first! And this wasn’t with an expensive camera, just a standard point and shoot I’d had for years. I didn’t do it every day, but it progressed. I would take photos out of the window and eventually in the garden. Whenever I felt well enough I’d read online about DSLR cameras, and (over years) learnt to understand and operate one long before I bought my ‘real’ camera.

People always comment now, when I go for jobs or discuss my illness, that it doesn’t matter that I didn’t go to university, or do this and that I had planned, they can see I kept up what I could and that shows my enthusiasm. We are so lucky in this day and age, learning doesn’t mean having to go to a course or even go to the library to search and gather information, which takes time and energy I didn’t have.

The internet (once I built up my tolerance to working on the computer) was a huge saviour in my illness, information is so easily accessible. You can learn by simply asking Google! Youtube is an amazing learning tool, you can learn just about anything on there, and replay the video 300 times if you need to, stop and start and take it at your own pace. The same for free online tutorials. I played around with Photoshop for years, nothing formal, just trial and error, and now it’s such a great skill I use all the time. The same with my photography. The irony is if my ‘plan’ had have come true and I never got unwell, as I wished so many times, I may not have learnt something I now love!

I tried to keep up a few ‘hobbies’ so if it wasn’t a photography day, it may be a writing day. I wrote about how I was feeling, read online forums, The Fashion Spot, was a favourite. I didn’t even contribute by commenting, I just read the forums comments and felt involved, listening to others opinions was my way of keeping engaged with the goings on at magazines etc.

After many years, and many ups and downs, I began to feel better and my energy levels improved. I did some free writing work online for blogs and a few small magazines, volunteering to do this meant no scary deadlines if I wasn’t feeling well, but most of all I enjoyed it. Writing about fashion didn’t seem like work for me, even if it took me a long time to write one article. I kept up my photography and added my skills to my CV.

Pink t-shirt hanging up with lots of coloured beads suck to the frontCraft turned into career for me, I now write a weekly DIY column for an online magazine, where I make an item, then photograph it. I also write fashion and lifestyle articles for a number of different magazines. I know this is rare and I am so lucky to be at a place where I can do this, but it didn’t happen overnight. I think it shows though, anything is possible, disability or not.

I would say to people reading this that everyone is good at something. Everyone. Try things, don’t let yourself tell you you can’t; yes there’s a million reasons you shouldn’t do something, but listen to the one that says you should. Find your heart’s desire, and incorporate it into your life in some way.

I would suggest watching TED talks, they are so inspirational! Zach Anner on Youtube will make you laugh – ‘Milestones’ is a favourite video! Read Dr Viktor Frankl’s ‘Man’s Search for Meaning’, he will make you feel like you can do anything. Surround yourself with positivity. Don’t give up.

Feeling inspired to get creative? If you would like to see what I’m crafting next, writing about or creating, and a lot of pictures of my dog, you can follow me on Twitter and Instagram as @jennybrownlees.

There’s more to me than meets the eye – #100days100stories

Sam recently wrote an open letter to the lady who tutted at her for using a disabled loo, which went viral.

This blog has now moved to our online community.

Join Sam on our online community where she explains why she’s started raising awareness for people living with an invisible disability.

How do you solve a problem like James? – #100days100stories

This is a guest blog from Holly Gaunt, 31, mum to James. He was diagnosed with autistic spectrum disorder at four-years-old. Now five, James attends a special school near their home in Portishead, Bristol.

In 2014, Holly began a blog about life as a parent of a child with autism. We’re sharing her story as part of our 100 days, 100 stories campaign

Since having children, I have become an expert in speed-shopping. In fact, unless I’m desperate, I try to avoid it altogether.

But today was an emergency: we had run out of milk and, more importantly, chocolate. I had no choice but to run the gauntlet, so to speak, keeping everything crossed that James would co-operate.

Unfortunately, about 10 feet Young boy sitting on a log on the grassinside Waitrose, James decided he’d had enough of holding my hand.

Before I could stop him, he had bolted around a corner and out of sight.

After trailing the aisles for several minutes in a panic, I eventually located him in the packed café.

I summoned my strength and managed to hoist him up over my shoulder whilst he screamed and smacked me in the face. For a four-year-old, he packs a surprisingly hard punch. I forced myself to grit my teeth and ignore his violent protest – experience having taught me that reacting would only egg him on.

At the checkout, I had to abandon my shopping several times to chase him as he tore off down the aisles, responding with a tight smile to the commentary of the checkout lady: “He’s a livewire, isn’t he?” I could feel about a hundred pairs of eyes on me and I knew exactly what they were all thinking.

And therein lies the ‘problem’ with James.  People don’t realise that he has autism, because he looks ‘normal’- so he is judged by normal standards. To other people, James is just naughty and needs a firm hand, which clearly I’m not giving him.

People with autism struggle to cope with sensory stimulation.Mum on the beach with baby and young son

For James, the supermarket isan overwhelming myriad of bright lights, colours, and noises forming a general din that makes him anxious and hyper. And because social norms mean very little to him, tearing through a crowded supermarket and throwing himself in the path of oncoming trolleys is not something he perceives as a problem.

James also lacks the necessary awareness of danger to prevent him from running off without a backward glance when something captures his interest. He isn’t being belligerent or ‘testing the boundaries’- that requires at least a very basic understanding of other people and their expectations.

Like our shopping trip, trips to playgroups, soft play centres, children’s parties, simple experiences that most parents take for granted are decidedly difficult for us. The common theme? Well, it’s other people. The staring. The whispered comments.  I could grow a thicker skin but that’s easier said than done.

The truth is that all of us, myself included, have at some point or another been guilty of judging a situation without knowing the facts. I hope that, by explaining autism from a parent’s perspective, I am helping to raise awareness of this misunderstood condition. Have you read this and learned something new? If you have, then I am one step closer to achieving that.

There’s lots of information on Scope’s website on autism and about being a parent of a disabled child.

Get involved in our 100 days, 100 stories campaign and read our stories so far.

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.