Hidden Disabilities and Invisible Illnesses – My Thoughts and Experiences

When I was a child and a teenager, I did not like being called, “disabled.” The reason for that is because I am able-bodied and I don’t use any aids such as wheelchairs or Zimmer frames that people most commonly associate with physical disabilities. When I was at my first college (I went to three further education colleges from the ages of 16 – 25 with some part time recreational courses such as needlecraft and calligraphy in between), I was filling out an application form to start the BTEC National Diploma in Multimedia after having already completed my BTEC First Diploma in a similar subject. My tutor, who helped me complete the form, told me to say no to having a disability, but yes to having a learning difficulty, which made me perceive my autism as a learning difficulty back then. Several years into adulthood, I learnt about hidden or invisible disabilities, hence the message, “Not Every Disability is Visible,” and that autism can be one of them. Despite this, I wasn’t in a particularly good mood when someone referred to me as, “disabled,” in a Facebook group post about a shocking incident I was recently involved in after I messaged them about it, but I put it down to still being shaken and traumatised by the incident. I would have preferred the author of the post to refer to me as, “autistic,“ because not only is it more specific, but I was worried that some people might think I’m in a wheelchair when I’m actually not, although some might think I have a hidden disability, which is completely true.

Crohn's and Colitis UK Sign

Source: Crohn’s & Colitis UK

Further to the, “Not Every Disability is Visible,” message, it appears on signs that are being added to accessible toilet doors throughout the U.K. One example of this sign appears on an accessible toilet door at the Motorpoint Arena in Cardiff. When my mum and I saw Disney On Ice in Cardiff just after Easter 2019, she led me to the nearest toilet to our seats during the interval. The first thing I noticed on the door was the, “Not Every Disability is Visible,” sign and I couldn’t agree with it enough. Although I thought the sign was placed on the door as part of a Crohn’s & Colitis UK campaign (one influencer I follow online is backing this campaign as she has a stoma), I still resonated with it in terms of having autism.

Some disabilities look like this

Source: brienblatt.com

When my mum and I boarded the train from Newport (where my parents live and I was staying with them over Easter) to Cardiff for Disney On Ice, we were looking for somewhere to sit and my mum found a disabled space. She insisted we sit there, but I wasn’t sure. My mum said that I could sit there because I was disabled and then she told me that not every disability is visible. We sat down and I decided to show my mum a similar sign to the one on the toilet door at the arena on my phone. It depicted a person holding a walking stick and another person assisting them, a person in a wheelchair and another person holding a crutch. Above these people reads the text, “Some disabilities look like this.” Below the people with visible disabilities is an able-bodied person. Above the able-bodied person it says, “Some look like this,” which indicates that although the person appears to be able-bodied, they could have a hidden condition such as autism, chronic pain or epilepsy. Both my mum and I agreed with the sign I showed her on my phone. Since Cardiff was our only stop, we thought it was okay if we sat in the disabled area provided that there were no wheelchair users in our carriage. Had someone in a wheelchair and an assistant needed that area, my mum and I would most likely have given up our seats and looked for somewhere else to sit.

Jubilee Line Priority Seat

Not only do many accessible toilet doors have signs about invisible disabilities, but similar signs are also placed on priority seats on some London Underground Jubilee Line trains. I think this is an excellent idea and it should be on all forms of public transport.

London Underground Priority Seat

Besides the experience my mum and I have had on the train to Cardiff, I have had some other experiences on public transport that involved the use of priority seats, particularly in London.

On my 20th birthday in 2007, a member of support staff from my former care home accompanied me on a trip to Brighton. When we got off the tube on the way home, we went on the bus and because most seats on the lower deck were taken and I didn’t really want to sit on the upper deck, I sat in a priority seat. As the journey home progressed, I felt agitated about the support worker not sitting next to me. The support worker then explained that she couldn’t sit beside me because she observed that I was sitting in a priority seat and she refused to sit in them. When we got home, I explained to the support worker that I felt upset about her not sitting next to me (I had a very strong attachment to that particular support worker). She further explained that she had the tendency to save priority seats for passengers who needed them more than she did such as a pregnant woman or someone who has had a hip replacement. This made me feel bad about sitting in the priority seat, but like in my childhood and youth, I had no idea about the hidden disability message back then.

While I now avoid sitting in priority seats for the most part, I usually sit on them on the bus when I have my suitcase with me since they are right behind the luggage rack where I can keep a close eye on my suitcase (I have already addressed this in this blog post) and priority areas for luggage on Piccadilly Line trains also when I have my suitcase with me.

One occasion on which I was offered a priority seat was when I was on the tube home from work and the tube was very crowded, so I had to stand for the majority of the journey. There was a pregnant woman with a, “Baby on board!” badge sitting in the priority seat opposite from where I was standing. When the pregnant woman departed the train, another woman offered me the priority seat probably because she noticed I had a lot of stuff on me including my handbag, my backpack for my laptop and some additional bags for my packed lunch and shopping and she might not have noticed it was a priority seat. I said, “No thank you. It’s a priority seat.” The woman then sat down in the priority seat, which I was uncertain about, but I thought to myself that I could have sat in that seat if I have a hidden disability. I didn’t sit in that seat because I took the sign above the seat literally in case people who were pregnant, elderly, had babies or children with them or were less able to stand needed it more than I did (I once moved seats on the bus to offer them to a mother and her child). On another occasion, I took the bus home from work as I wanted to go to my nearest large supermarket on the way home since it was easier than taking the tube. Again, the bus was very crowded, but when some people departed, a man pointed out an available seat to me also because he might have noticed me carrying all the things I take to work. I happily obliged to sit in the seat he pointed out because it wasn’t a priority seat and it was at the back of the bus. There was one last occasion on another tube journey home from work where another woman offered me a seat because she too might have noticed me carrying the same things I take to work. I also obliged to sit in the seat she offered me because it wasn’t a priority seat.

Sometimes I get backache when I stand up for long periods of time, but even if I was in this situation I would let a person who needs to sit in a priority seat more than I do sit in one. I once heard of a woman online who was in her latest stages of pregnancy and still offered priority seats to elderly people or those who used walking aids, which was very courteous of her.

Besides, “Baby on board!” badges, TFL also offer badges that say, “Please offer me a seat,” for passengers who have hidden disabilities or illnesses. I think these badges are a good idea and they even come with accompanying cards that remind passengers that not all impairments and conditions are visible to make it more clear to them and to hopefully avoid any potential judgement. Another influencer I follow online has Crohn’s, endometriosis and tendinitis, all of which can cause her chronic pain. As a result, she wears a, “Please offer me a seat,” badge on public transport. When the influencer was sitting in a priority seat on the bus whilst wearing the badge, an elderly man said she was selfish – he most certainly couldn’t tell that she had those conditions as they were invisible and he might even have thought he needed the seat more than she did maybe because he thought younger people didn’t need to sit in those seats. The influencer was worried about being judged if she wore the badge such as by the aforementioned elderly man for example, but on another occasion somebody very kindly offered her their seat with no judgement whatsoever.

Clockwise from top left: My TFL, “Please offer me a seat,” badge and card and my hidden/invisible disability badges from Etsy Shops; me wearing my hidden/invisible disability badges; Priority Seats sign on a Newcastle Metro train; my Disabled Persons Railcard; priority seat sign on a Grand Central train from London King’s Cross to Sunderland.

Even though TFL offer a card that says not all impairments and conditions are visible, there are several Etsy shops that sell badges that say the people who would wear them have a hidden disability or illness. They would be perfect additions to the, “Please offer me a seat,” badges so that things would be made even more clearly to other passengers. Although I have never worn my, “Please offer me a seat,” badge on public transport and it is pictured in this post for display purposes, I decided to wear my hidden disability badges on my train journeys to and from Sunderland to accompany my Disabled Persons Railcard that I’m entitled to if I get PIP. When I moved seats a couple of stops after my departure destination away from some noisy, singing people on the train on my first journey (I was originally sitting in my reserved seat, but the seat reservation tickets were removed at some point along the journey), I didn’t realise I moved to a seat that had a notice advising passengers to give it up if it was required by elderly or disabled people, but I guess I could sit in it if I have a hidden disability and wore my badges unless it was reserved for other passengers from a particular train stop (I also sat in one of those seats from Sunderland to King’s Cross, but I gave them up for an older couple who had those seats reserved at the station they boarded the train from). When my mum and I sat in priority seats on a Metro train to Newcastle while we were on holiday in South Shields, I decided to put my hidden disability badges on in case people would wonder why I was sitting in the seat. I also put my badges on when I sat in a priority seat on the tube on my way to work once as it was one of the only seats available when I boarded the train.

To conclude, while I did not like being referred to as, “disabled,” when I was younger as well as in a more recent instance; I once perceived my autism as a learning difficulty; I felt guilty and confused about sitting in priority seats in the past; and have previously been peeved by people who are not pregnant, elderly or less able to stand sitting in priority seats (they might have had hidden disabilities and chose not to wear badges that show this), I have learnt to accept my autism as a hidden disability in adulthood. I also believe that I have the right to sit in priority seats if I need to (likewise with the right to use accessible toilets even if I don’t have Crohn’s, colitis or a stoma), especially those behind luggage spaces on buses when I have my suitcase, but I would be more inclined to sit in them if more had signs that mentioned hidden disabilities much like those on priority seats on some Jubilee Line trains or on accessible toilet doors, or if I wore my hidden disability badges.

Links

Crohn’s & Colitis UK Not Every Disability is Visible campaign: https://www.noteverydisabilityisvisible.org.uk

TFL – Please offer me a seat: https://tfl.gov.uk/campaign/please-offer-me-a-seat

Etsy: https://www.etsy.com (Search, “hidden disability badge,”  “hidden illness badge,” “invisible disability badge,” and “invisible illness badge.”)

My Thoughts On The National Autistic Society’s ‘Diverted’ Film and How I Find Using Public Transport: https://stompgal87.blog/2018/04/07/my-thoughts-on-the-national-autistic-societys-diverted-film-and-how-i-find-using-public-transport/

Disclaimer: This is not a sponsored blog post. All images are my own except for those I have found elsewhere and given their sources.

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