My Personal View of Having a Disability

Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.

Mary Anne Radmacher

One of my blogging friends, Melinda, from ‘Looking For The Light’, posted on her blog that March was Disability Awareness Month. I hadn’t heard of this, possibly because we don’t have this day in the UK. However, I’d been thinking about writing about my view of being a disabled person. I said I would do this before the end of March, as it seemed an appropriate time to write my own perspective.

So … just a bit of background information … Many years ago, I was involved in a fairground accident, which injured my cervical and lumber spine, meaning that some of the nerves from these areas were damaged. This affected my ability to walk, move, feed myself, or drink out of an ordinary mug or cup. I had a lot of care to begin with, but was determined to be independent.

I’ve come to terms with my accident and my disability. I wouldn’t have it any other way now. If I were given a wish, it wouldn’t be to rid myself of my disability. I am who I am; I am learning to love and care for myself. I can manage a few steps with a walking trolley indoors; I have an adapted kitchen and a wonderful electric powerchair called Alfie, who is my legs and wheels combined. Alfie allows me to travel independently. I don’t drive. I can’t even get a taxi; believe it or not, my town has no wheelchair-accessible cabs!

Buses are a nightmare and nigh-on impossible to navigate. Trains are relatively easy (except in the rush hour), as I learned from visiting London (40 miles away) to see my late Mum when she was in the stroke rehab. hospital. Travelling in rush hour means being packed like a sardine and at the exact height to be thumped on the head by someone casually throwing their bag onto their shoulder. Worse still, in the crowds, I’m perfectly lined up with all those armpits – close up – some more fragrant than others!

Travelling about is both a frustration and a joy. I can ride at 8mph (13 km/h), which is pretty speedy, and I am lucky to live near a foot/cycle path that takes me into town. I never knew which side to travel on, given that I’m neither a pedestrian nor a bike. I used to get dirty looks from disgruntled people on either side of the path. Well, where on Earth am I meant to go? I now drive down the white line in the middle! Problem solved!

The weather can be a challenge sometimes. I can’t use an umbrella as I’m driving with one hand and holding my bags with the other. If it rains, I get soaked – simple as that. I’ve got used to it, and knowing that my skin is waterproof and clothes will dry off, it really doesn’t bother me anymore. Yes, I could get one of those plastic capes for wheelchair users, but I wouldn’t be seen dead in one of those! So, does it serve me right if I get soaked – yes, I guess it does! Snow is out of the question. Living at the top of a steep hill, as I do, makes it far too dangerous to even step foot (wheel, in my case) out of the door.

Also, I have two major phrases used by many people, most commonly found in (but not isolated to) the US, both of which I detest with a passion. The first is one I hear said a lot on American television programmes, and that’s the use of the word ‘handicap’ when referring to a disabled person or in a car park as the description given to the allocated ‘handicapped’ parking space, as opposed to, in the UK, where we have accessible parking spaces or Blue Badge parking. The term ‘handicap’ is only used in the UK as a type of insult these days.

The other phrase that gets me is the description of a disabled wheelchair user as ‘wheelchair-bound’ or, worse still, ‘bed-bound.’ I’m not bound to my wheelchair or my bed by ropes, as the phrase might suggest. Please, think before using those terms. Thank you.

My pet hate is being stuck indoors against my will, either because of the weather or, like this week, because my battery decided to fail, and I had to wait two days for an engineer to come out to fit a new one. I feel a sense of panic as my independence is taken away, and I’m trapped at those times, and that’s not a desirable feeling for anyone. If you can imagine giving up your legs for a while, that’s what it feels like for me not to have my wheels. If all else fails, thank goodness for online shopping and Amazon.

Finally, I count myself lucky. I realise that not all disabled people feel the same way as I do. This is just my personal view of living with a disability and being a wheelchair user. I am, on the whole, very happy in my own skin.  

If you have any questions you would like me to answer, please feel free to ask in the comments section; alternatively, you can reach out to me through my ‘contact me’ page. Thank you.

Author: Ellie Thompson

Writing my memoirs, musings, a little fiction and a lot of poetry as a way of exploring and making the most of my life ... ... Having had a break from writing my blog for more than three years, I decided to return to write my memoirs, some day-to-day observations, views and feelings. My passion is non-fiction poetry. I have a disability and use an electric powerchair called Alfie and let nothing get in the way of living life to the full. I believe that you can never do a kindness too soon and should give credit where credit is due. A smile or a kind word could make the difference between a good or bad day for a person - we never know what's going on for another soul. Those little things, perhaps, practised daily like a mantra, could mean so much to someone else. Thank you for visiting my blog and reading a little more about me. Please, make yourself at home here. You are very welcome. Ellie x 😊

58 thoughts on “My Personal View of Having a Disability”

  1. Wow! I’m just learning this about March. Thanks for sharing your perspective. My adult son is Autistic and He is my husband’s right-hand man. He works everyday with his dad, on all sorts of construction projects…painting, sanding, drywall, etc. I often wonder if he would have embraced our family business as passionately, had it not been for his disability. For so many years, I wished for him a ‘normal’ life, but at this point, I realize that I am extremely blessed to have raised him, and to have witnessed his transformation from my precious boy, to a very handsome and extremely capable young man. I’m so thankful for him, and all that he does with, and for our entire family.

    1. Thank you for reading and leaving me a comment, Tamweary. It’s much appreciated. I’m pleased that your son can work with his dad. He certainly sounds like he’s learning a few skills as he goes along, which is excellent. We never know what our futures are going to hold. I’m so glad you feel proud of your son for being the man he now is. He definitely sounds like a blessing to you and your family. I have a friend who’s autistic, and he often talks about his challenges in life; even so, he was an excellent teacher in his younger years. He was determined not to let his autism stop him from achieving. I also have a ten-year-old granddaughter who has Sensory Processing Disorder, which is on the spectrum, too. She’s doing really well at school and is brighter than many of the other children in her class. Take care of yourselves. X 😊🌹

  2. What a wonderful spirit you have. ❤ I love it as a testimony to a life well lived. Our differences make us stronger more than most will ever realize. It is stressful to be with out our independence yet it brings us resilience amongst the daily changes of life. Thank you for sharing your strengths. ☺🙏

    1. Thank you, Cathy, for such a lovely comment. It hasn’t always been this way; I think, as I’ve got older and come to terms with my disability, it’s become far easier to manage and to feel more positive about. In the early days it wasn’t easy, but then getting used to anything new takes some determination and perseverance. I wouldn’t change a thing these days. Xx 😊💕

      1. I hear you on that one. I live in the austic spectrum with additional learning disabilities. It was very hard as a youth being different yet I was able, with persistence and a strong will, to overcome this life long disability that is invisible to most. I would not have it any other way as it has blossomed into a unique perspective on life. Thanks again for sharing your strength. It takes persistent so bravo 👏 on your strength. ☺🙏

        1. Thank you, Cathy. I have a friend who is autistic and has been a very successful teacher in his youth. My ten-year-old granddaughter has Sensory Processing Disorder but is doing well at school. I think, sometimes, it must be harder to have an invisible disability than to have an obvious one like mine. People can see I use a wheelchair, making it easier for me to ask for help to reach something on the top shelf etc. With an invisible condition, I imagine people aren’t, perhaps, quite as accommodating. With a determined attitude, I think we can go a long way in life. I’m glad you can see your unique views on life as something precious. Xx 🥰

    1. Thank you very much, Granny. I’m fortunate to have a lot of support from my friends, like you, and from some of my family. I’m just doing what I’m doing to get through life in the best way I can. Love you Xxx 😊💖🥰

  3. The wheel chair doesn’t defy you, neither do my working legs defy me. I have an uncurbable disease, one of these painful autoimmune disorders. I didn’t ask for it, got it for free. 🙂
    The disease doesn’t defy me either, neither do I allow it to control me.
    Sometimes I think the ones who live with a challenge, dig deeper.

    1. I entirely agree, nonsmokingladybug. I think, sometimes, it’s a case of sink or swim. I chose to learn to swim. I imagine that having an autoimmune disease is pretty challenging, too. Sorry, you’re in pain with it. My son-in-law also has a rare autoimmune disease, too. I love how you casually say; I got it for free. I guess I got mine free as well. Our disabilities, illnesses, or lack of, don’t define us, I agree. Thank you for reading and commenting. It’s much appreciated. 😊🌹

  4. You have a very can-do spirit! I applaud you! When I lived in Tucson, AZ, the busses there were wheelchair accessible, with special lifts. The stairs would convert into a lift station which was wonderful to watch. Here in St. Louis, Missouri I’m not seeing those kinds of busses, they seem to have opted for the little shuttle bus service which takes people door-to-door, but has to be ordered in advance, taking away a spontaneous outing. I’m helping organize a writer’s retreat for Faculty where I work, and an taking care to make note of which condos are upstairs, downstairs or completely accessible. Offering accessibility to people takes more work, but including everyone is more important!

    1. Thanks, Tamara. I wasn’t always this positive. I’ve learned to adapt in more senses than one. Eventually, I realised that I could either be a person with a disability with a negative view of myself and the world or a disabled person with a positive attitude. The first option would mean a miserable, feeling sorry for myself lifetime. In contrast, the second option would mean being positive and content in myself and having a much better view of my disability and the possibilities I can have rather than what I can’t have or do. Even when my mental health was very poor, as it was last year and at the beginning of this year, I never felt sorry for myself as far as my disability was concerned.

      I’ve never seen a bus like the one you describe. Our public transport leaves a lot to be desired for wheelchair users. The buses do have a drop-down step so I could get on, but the space inside is laughable if it wasn’t so frustrating.

      A writing retreat sounds like heaven to me. I’ve never done anything like that, but I would certainly like to. It’s great that you’re researching whether the condos are accessible or not. There are so many things that don’t take accessibility into account, thereby excluding disabled people. I should add that many disabilities are hidden and not so apparent as someone using a wheelchair, and these people need to have their needs catered for, too. It’s wonderful that you’re making an effort to include everyone of all abilities. Inclusivity is so important. Xx 💐

      1. “I realised that I could either be a person with a disability with a negative view of myself and the world or a disabled person with a positive attitude.” This is a very needed set of information for many people. Have you considered writing a TED talk?

        1. Thank you, Tamara. I’m touched that you thought my words were good enough for a TED talk, although I don’t think I could write a whole talk as they tend to be quite long and much more professional than I could be. I’ll keep it on the back burner for a while, or maybe, I’ll try and draft something and work on it. You’ve definitely sown a seed, though. With TED talks, doesn’t the writer also have to read their writing out loud? Xx 🌹

          1. Yes, usually people write put their script, memorize it enough and then share their thoughts. I don’t mind casting out a seed! You can keep it in a warm place and allow it to grow when it feels ready! It may even tell you what it needs to nourish it and help it to grow!

            1. Thanks, Tamara. Thanks for that information. I don’t think I could ever ‘stand up’ (or sit, in my case) in front of an audience. I don’t have that much confidence and have a memory like a sieve! However, I will keep the idea on the back burner and reassess it occasionally. Xx 😊💖

              1. One never knows! I think some places have teleprompters to help people, most places have screens to put up a PowerPoint, and some are very tiny venues with very few people. You can see what’s going on in your area and possibly reach out to the organizers to see if the record talks without an audience.

              2. Thank you for the advice and information, Tamara. That’s useful to know. I don’t know if my town has ever hosted a TED Talk before. I’ll have to make some enquiries if I decide to go ahead with this. Thanks again. Xx 🌷

  5. Ellie, I knew you had a positive attitude when I first read you had names for your powerchair and stairlift! 😀Several years ago, I developed a severe herniated disc in my neck. Since I didn’t want to hazard the risk of a cervical operation, I had to adapt my lifestyle to “fit” the condition. Like you noted, whatever illnesses or conditions we have doesn’t define any of us. I am sure you are an inspiration to those who know you, and I applaud your thoughts here.

    1. Thanks for your kind comment and for taking the time to read my post, Bruce. I’ve always named my power chairs because, in a way, they become my ‘friends’ and constant companions. So far, I’ve had wheelchairs called Charlie, George, Ollie and now Alfie. People ask me why I always choose male names, to which I reply, so I can show them who’s boss 😁, although I know that’s a bit sexist!

      I’m sorry to hear you had such a severe herniated disc in your neck. That must have been excruciating for you. I, too, was offered surgery on my cervical spine, but it came with the risk of being left permanently quadriplegic, and I wasn’t willing to take the chance. I’m glad you’ve managed to fit your life around your pain and any disability that has resulted from your cervical spine issues. Is it still painful? Thanks again for such an encouraging response to my post, Bruce 😊.

  6. I never considered that mobility issues for people using wheels or walkers was such an issue in other places. I don’t think Canada has UT completely figured out, but a lot of things, including public transit and cabs, entrances, and sidewalk curbs, have been changed to give mobility to many different requirements.
    You show courage every day and inspire me in my own life. Thank you for sharing your experiences. Xx

    1. Thanks for your kind comment, Allie. Many people don’t realise the issues that disabled people face when travelling. It sounds like Canada has sorted things out a little more than the UK. It’s great that they have done this. Dealing with accessibility issues over here is a challenge. Even now, if I’m travelling somewhere in Alfie, even locally, I come across a lack of dropped kerbs, or worse still, inconsiderate people that park on a dropped kerb, completely blocking my path, which means I have to turn around and head for home again. That’s infuriating when it happens, and I have been known to mutter a few curse words at the time! I never think of myself as being an inspiration to anyone, so it’s very kind of you to say so. Hugs Xx 💐💕

    1. Thank you, Geoff. If I can help to encourage another disabled person to live their life to the full, I would be honoured to do so. I think, when faced with what could be a dire situation, acceptance is half the battle. Without that, a person could end up spending many miserable years. Life is too short to give up the struggle and to end up living an unhappy and partly wasted life. Our lives are too precious to waste half of them. I do realise, though, that there are people an awful lot worse than I am. I have full use of my arms, which are really strong from self-propelling my indoor manual wheelchair. That’s definitely an advantage. Thanks again for your thoughtful comment.

  7. Our use of hurtful phrases is really crazy. I have a story about the phrase “wheel-chair bound.” I was in college in one of my Journalism classes many, many years ago and one of my peers used that phrase. The professor pulled the kid up to the front of the class and asked if he was “idiot bound” meaning he was a moron for using the phrase. The prof’s antics definitely worked. I know that I’ve never used that phrase!!! Excellent post Ellie. Love how you handle your situation with grace. “I wouldn’t have it any other way now. If I were given a wish, it wouldn’t be to rid myself of my disability. I am who I am.” Lots to learn from your wisdom. Thanks for sharing.

    1. Thanks for your comment, Brian. I’ve only heard the phrase ‘handicap’ from US sources, although I realise not all people there use this description. It would be wrong of me to tar everyone with the same brush. However, wheelchair-bound or bed-bound is sometimes used over here, too. I’m so glad (and a bit tickled) that the professor pulled the student up on his use of the term. I love that he pushed the point firmly home using the words ‘idiot-bound.’ I’m glad you have never used that phrase, too. Over the years, my mental health issues were far more disabling than my physical disability. I’m very thankful that my mental health is good, unlike last year and at the beginning of this year. I feel like a totally different person, and long may it last. Thanks again, Brian 😊.

  8. Thank you, as always, for your honesty! It helps us to know how to relate to those who are dealing with physical disabilities. I wish that out society was more accessible to all people, but we sure have a long way to go in that department. Thanks for shedding light on this!

    1. Thanks for your comment, Ann. I am pleased that my writing helps people to understand how to relate to people with disabilities. I agree society, in general, needs far more awareness of these issues. Despite my positive attitude, I do come across many obstacles that infuriate me, such as cars being inconsiderately parked on dropped kerbs, that is, if there’s even a dropped kerb available. My other bugbear is drivers that sail straight over a zebra crossing when they can quite clearly see I’m waiting in my wheelchair to cross over. I sometimes wonder if I am invisible. I have been known to use a few curse words in those situations 😉!

    1. Thanks, Mick. It’s really a case of sink or swim. I can either sit here and feel sorry for myself or pull myself up by my bootlaces and get on with my life. I chose to do the latter. I do feel my attitude goes a long way towards living a fulfilled and happy life. I know I haven’t always been happy, and I still have my down times, but on the whole, my mental health issues got me down far more than my physical disability. I’m glad to be out of that mental health trench and back on the road to a normal and content life 😊.

  9. In India we have special terms like
    Specially able and Divyang. Divyang in english means “one with a divine body part”.

    We don’t have any special facilities for Specially able and reading this made me realize that.

    People don’t even have an electric wheelchair, so one that operates with hand takes a lot of effort.

    It’s good to know that you can manage things for you. This shows that you have tremendous potential.

    More power to you. Keep shining.

    1. Thanks for your kind comment, Devang. I’m very impressed that you have special terms for people with disabilities that are more respectful than some. I love that you have the term Divyang – that’s fantastic.

      Goodness, I can’t imagine being without my electric wheelchair as it opens up the world to me. I do use a manual wheelchair indoors but my arms have become strong from self-propelling myself around my house. I’m determine to live as near a normal life as possible. Thanks for your positive words, my friend 😊.

  10. Ellie, I think it’s wonderful that you’re so positive about your disability. I’m certain I wouldn’t feel the same way. I spend A LOT of time bemoaning my challenges, and your disability is a giant step up from anything I deal with. I think I should internalize some of your positive energy. It would do me a world of good. Sorry if I’ve ever stepped in the “American Handicap Trap”. The term handicapped parking is thoroughly ingrained in our lexicon.

    1. Thanks, Jeff. Being positive about my disability is a bit like a sink or swim scenario. At first, I just wanted to disappear and stay in bed feeling sorry for myself. After a while, I realised I was only making myself feel a whole lot worse. I eventually decided to have a go at ‘swimming’ rather then sinking. I’m so glad I did; otherwise, I’d still be burying my sorry head in the duvet to this day. I think it’s about acceptance, too. I know there’s nothing I can do to make it better, so I might as well get on and live my life in spite of my physical problems. I’ll zap you over some of my positive energy if you like 😁. It’s strange that the US still use the term handicapped parking after all these years of political correctness. Even Grammarly corrected me when I typed that word by suggesting it might be offensive to some people! It’s become more of an insult these days over here. However, I won’t take offence if you use it as it’s all about cultural norms really. Hope you and yours are all well. I’m just about to read your latest post, too 😊.

  11. I can’t believe you have a disability. You are very strong woman. You can’t never feel you have disabilities. It’s wonderful that your so positive about your disability.
    Iam emotional to u .
    God bless you!
    Pray to God you have get a healthy.
    Very interesting you sharing you life lived.
    Thanks 🙏

    1. Thank you, Rajkkhoja. I am very lucky. I have a lot of good things in my life, and tend to think about them more than I think about my disability. It’s very kind of you to think of me and for praying for me. I hope you are well and having a good day/night. Xx 😊.

    1. Thank you so much, Cindy. That’s very kind of you. It’s gone midnight and I’ve just gone to bed. I’m taking a couple of days off as I have my two grandchildren staying over from today until Saturday morning. I’ll be back writing very soon. Xx 💖

  12. You’re so right about the language we use and how awful and discriminatory some of those dated terms are, terms that imply the person is the problem and it’s finite, rather than the environment being the problem and that it excludes because of a lack of adaptation. During a holiday years ago I saw the ‘handicapped’ sign in a Bahamas (which seemed very americanised) car park and was horrified, I took a picture of it to prove I wasn’t making it up – at the time I thought the whole world had moved on from that term, but clearly not,
    Hopefully this will change – thankfully the UK seems very forward thinking on disability, generally speaking, but that lack of accessible really taxis needs to change.

    The fragrant armpits – that’s torture at the best of times, worse if you can’t easily move away from them 🥴

    Take care xx 🌼🔆

    1. Thanks for your comment, Cherryl. I think, in general, the UK is getting better at not using discriminatory language regarding disabilities. I’m not surprised you saw a ‘handicapped’ sign in the Bahamas. I think that any counties with American culture are more likely to use these terms (nothing against people in the States) because it’s just part of their language and is widely accepted there, as it may well be in other places, too. We have disabled parking bays, which are helpful when not full. I’ve seen trade vans park in these spaces several times, and I actually see a driver hop up into the cab and drive off. I’ve reported this to Tesco, where I go regularly, but they blame the council for their inaction, and yet, the council blame Tesco!

      I can’t win. It’s fairly unbelievable that in 2023 and in a big city that there are no accessible taxis. There used to be a taxi company with a minibus with a tail lift at the back to lift my heavy wheelchair into the rear of the vehicle, but apparently, they didn’t have enough call to make it financially feasible. Even the buses are a nightmare, as are underground trains. Overground trains are better, although if I have to switch to another line, it’s an impossible challenge. Take care Xx 🌼💞

  13. What an important post, Ellie. Thank you for sharing your experience. Alfie sounds like a cool chap and I have this beautiful image of you speeding along with your hair flying behind you!

    1. Thank you, Bridgette. I wanted to spread awareness about people with disabilities and some of the drawbacks but also the many positives about it, too. Your image is about right – Alfie is great; he is my legs, my wheels and my freedom. I travel very fast down the cycle/footpath and when my hair is long, that exactly what I look like 😊. Xx 💙

  14. Thank you for sharing your personal view and experiences of living with a disability and being a wheelchair user. It is eye-opening to hear about the challenges you face in navigating everyday tasks such as travelling and dealing with the weather. Your determination and positive outlook on life are inspiring, and I admire your ability to embrace your disability and live your life to the fullest. It’s also important to note that language matters, and the terms we use can have a significant impact on how we view and treat individuals with disabilities. Thank you for raising awareness on this issue. Keep shining your light!

    1. Thank you so much for reading my post and leaving such a kind and encouraging comment, Allobility. I was in London this week and encountered the Underground for the first time in decades. It was a nightmare as the underground system in the UK is not at all accessible. It was a real eye-opener to me, although the overground trains are easier to cope with. I decided long ago that I wouldn’t let my disability stop me from fulfilling my life to the best of my ability. I have down days sometimes, but they are rarely connected to my physical state and are more likely due to anxiety or lack of sleep. I agree that language is so important. A few weeks ago, I was doing some litter-picking in the local park with some friends (quite a challenge from a wheelchair). A woman approached me and said, “You poor thing, being confined to your wheelchair!” She told me she would pray for me to be able to walk again. I wanted to tell her that I was not confined to anything and was very happy the way I was. I just didn’t have the heart to say that when I was sure she meant well. I hope you are well and once again, thank you very much for reading my blog 😊.

      1. It’s inspiring to hear how you don’t let your disability stop you from living your life to the fullest. It’s unfortunate to hear that the underground system in the UK is not accessible and it’s important for society to continue to work towards creating more inclusive environments for everyone. Your encounter with the woman in the park highlights the importance of language and how it can impact people’s perceptions and attitudes towards disability. It’s understandable that you didn’t want to confront her, but as you know it’s important for us to continue to educate and raise awareness about all-abilities (Allobilities) and the importance of using respectful and inclusive language. Thank you for sharing your experiences and raising awareness about these important issues. Keep up the good work 😉

  15. Thank you so much for sharing! It is always reassuring to hear others undergoing a disability. I love your mindset! I have Cerebral Palsy which inhibits functions of my legs, practically no usage of my right hand (I am typing this with one hand), and poor vision. I’m not at the point yet where I do not wish to rid it, but I have accepted that it is my reality. I’m less ashamed about it.

    1. Thank you so much for reading my post, Banaanya, and I’m glad you were able to identify with it in some way. I think having CP would be much more difficult to cope with as it affects more of your body than just your legs. You must get very frustrated at times, and I feel for you. I can understand you finding it hard to come to terms with, although if you are beginning to accept the reality of it, you’re part the way there. I can appreciate that it’s not easy for you, though. When I was first disabled, I had very little use of my arms or legs and needed carers to wash and feed me. I’m fortunate that I’ve come a long way from there, but I’m also at a point where I know things won’t improve anymore. I am lucky that I have an electric wheelchair that opens up the world to me. Do you use a wheelchair? Can I ask how old you are (you don’t have to answer that if you don’t want to?) I am 65 now, so have had a long time to come to terms with my disability and I think that’s helped me greatly. Does your poor vision stop you from doing things? I have a niece who has no sight at all, but amazingly, she is studying medicine at Oxford. Thank you for sharing your experience of disability and CP with me – I am very touched. I will call in at your blog sometime today, as I would like to read more about you. Do take care of yourself. Ellie X 🌷

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