Having read our 10 bizarre experiences with carers article, Disability Horizons reader and wheelchair user Helen Wheels got in touch with her own amusing and frustrating experiences. This time, it’s with strangers, all because she’s disabled. It wouldn’t surprise us if you’ve all had similar maddening moments…
Hello. Although my pen name is Helen Wheels, my friends and family call me ‘Tish’. It’s after Morticia Addams, because my skin is pale and hair dark – with the odd highlight (grey hair!). There is nothing ‘wrong’ with me, as such. I have Lupus, which means my immune system attacks my own tissues and organs. Because of it, I have 18 significant impairments (greedy, I know!). If I listed how many operations I have had I would, again, appear greedy!
I enjoy going to the theatre and cinema, as well as cooking (with numerous aids), reading and swimming. I also love socialising with friends and family, when I can. I am unable to walk and am never sure whether or how my symptoms might flare up each day. But I am very fortunate to have people in my life who adapt to my needs.
Despite my disability, I like to keep up appearances, to help me to look and feel good. I’m definitely a fan of discounted beauty treatments, clothes, jewellery, haircuts etc. My motto is ‘sick with style’ – I like to be a Disabled Diva.
Due to poor health and disabilities, I am medically retired. But I do lots of voluntary work around welfare, disability and consumer rights. I also help people with acquired brain damage to study.
My carers are my husband, Sean (we’ve been together for 25 years, but married for four), and our miracle child, nicknamed Chia, who is 20. She is currently at university, thanks to the fantastic support from Signpost Carers, which helped her achieve her potential.
As you will gather, I like to have a sense of humour – it is my way of coping. I think it’s the same for a lot of disabled people. And as my carers are my family, members of the public can quite regularly get the wrong end of the stick – something I am sure you’re all familiar with, no matter who your carers are.
Hopefully, my list will not only ring true for you, but also make you smile.
8 bizarre experiences with strangers
1. Being offered overly forceful help
One afternoon, my daughter was lifting my wheelchair out of our car boot. A man came over and offered to help, saying: “Young ladies should not be expected to lift heavy things.”
My daughter politely refused the help – she is 20 and has been caring for me since the age of 3. The man, rather roughly, went ahead with helping by trying to lift me out of the car. He swiftly ran off after my daughter stood her ground and told him that she not only knows what she is doing, but also has belts in karate!
2. Being incredibly patronised
Four years ago my husband and I decided to rush into it and get married – after 21 years together! When we arrived at the hotel for our honeymoon, the receptionist said to my husband: “Oh isn’t it lovely when people like that get married.” Bending down to talk to me, she followed up with: “Aren’t you lucky?”
My husband was fuming, so blurted out: “And I’ve got Tourette’s so **** you.” We got an apology and a refund – not a bad result!
3. My daughter being told off
When out shopping with my daughter, I decided to wait outside the changing room in my wheelchair whilst my daughter tried on clothes. A small child in a buggy was wheeled nearby. She looked at me and asked: “Where is your mummy?”
My daughter came out and the child said: “You are a naughty mummy for leaving her alone!” I tried to explain that I am the mummy and my carer is my daughter. The child didn’t understand, so my daughter dutifully promised not to leave me alone again.
4. Getting scathing looks
At the supermarket, my daughter sometimes uses me as a trolley by putting her basket on my knees. This often draws attention. So, if people stare or comment, she says: “Well, she likes to be useful, so we are pretending that she is a shopping trolley.” We get a lot of sycophantic stares.
5. Being unintentionally kidnapped
We were at a shopping centre where it is mostly accessible, except for one shop. My daughter went in to get ramps, leaving me on my own or a moment.
A stranger, seeing me on my own, started pushing me. I can’t move my neck to look around, so I thought it was my daughter. That was until I heard her frantic voice yelling: “Don’t kidnap my mother.”
The person pushing me was mortified, so my daughter lightened the situation by joking that if I had been kidnapped, my daughter would have paid the kidnapper to keep me!
6. A pervy offer for help
Once at a railway station, my husband was carrying our bags while the porter pushed me. He started to breathe heavily, so we were concerned he might be unwell.
When we asked whether he was OK, he replied that he; “likes pushing women in wheelchairs as the view is great” – meaning my chest! My husband grabbed my chair and ‘accidently’ wheeled it over the porter’s foot.
7. Being offered a beaker for my cocktail
My daughter and I were having an evening out at a cocktail bar. It’s not easy for me to drink without a straw, so my daughter asked the barman for a paper one. The well-meaning but very uneducated waiter offered to decant the cocktail into a beaker! I am disabled, not a child!
8. Giving strangers something to stare at
If a lot of people stare at me – they often do. I am sure it’s the same for a lot of disabled people. So, when they do, to really give them something to stare at, my daughter tickles me so that I laugh loudly.
By Helen Wheels
Have you experienced anything like this? Tell us your frustrating and amusing stories by leaving your comments below, messaging us on Facebook or tweeting us @DHorizons.
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Well Helen Wheels… you certainly made me laugh, you wonderful person.
I really enjoyed this article, except for your husband claiming to have Tourette as an excuse to swear at someone who was clueless and rude. Tourette is often treated as a joke or mischaracterized as the “swearing disease.” It’s not a joke, and coprolalia (a tic that is characterized by vocalizations of swears and other “taboo” language including racial and sexual slurs) is relatively uncommon, though certainly one of the most noticeable and definitely the most often portrayed (usually for comic effect) in all types of media. My 16-year-old daughter has TS. Thankfully, she has never had coprolalia as a tic and she is on the more mild end of the TS continuum. Like you, she has been stared at and commented about by strangers. She has also been the target of significant bullying by peers and, sadly, some adults, including educators (we no longer live in that school district). She is strong and resilient and has become an incredible self-advocate and advocate for others. Like you with your disability, we joke about her tics sometimes; humor is invaluable!
I am commenting because you are clearly someone who has chosen to be open about your perspectives and stories about your disability and differences and I get the sense that you would want to know that your husband may have stumbled into a gaffe. I realize that your husband may, in fact, have TS, in which case, you already know what I’m talking about. Best to you.
I use a wheelchair following a medical injury which left me permanently disabled. I need a carer to push my wheelchair. Usually my husband. I often wear sunglasses to avoid eye contact. Other times I feel like I’m not in a wheelchair. If I speak to people they treat me like a “normal” person.
The one thing I can’t stand is pushy people. Its lovely if someone asks if I need help. But if they are rushing off with my personal belongings. Like they say “I’ll take that for you” and they rush off with my handbag. Even though I said No!
Usually sales assistants or medical staff. Just because I move at my own pace. Impatience leads them to be very rude and pushy.
I hate having a disability and its very intimidating when people are pushy.