Ambulatory wheelchair users; who are they?
The term ambulatory wheelchair user refers to people who have a disability or chronic illness and use a wheelchair, though they may have some capacity to walk in limited and particular circumstances.
Invisible and chronic illnesses exist among all age groups, from the younger to older generations. Whilst awareness campaigns about invisible illnesses, including those of ambulatory wheelchair users, have been running for some time many people still face discrimination, judgement and sometimes even abusive behaviour or harassment towards them from members of the public. It is often a case of others simply not understanding the nature of an invisible disability. However, it is important for users of wheelchairs and other aids to feel safer from prejudice, and this article will help explore and challenge the outdated stereotypes that still exist.
There are many reasons why a person may be an ambulatory wheelchair user, or indeed use other devices designed to improve the freedoms and quality of life for people of all ages who have mobility issues. Wheelchairs and other aids are not exclusively for individuals who have paraplegia or absent limbs, they are also used by people with lower body injuries, unstable joints, chronic pain, debilitating fatigue, unsteady balance or postural orthostatic issues including frequent fainting (syncope).
With lived experience of disability and chronic illness for over 20 years, I am totally driven to try and live the best life I can with the health issues I have. I wanted so desperately to continue working in my chosen profession, to be a ‘useful’ member of society, but literally felt like I was on my ‘last legs’. In 2019 I had to take time off sick from work to recover from my latest ‘crash’ in health. Walking would cause my heart rate to rise, my blood pressure would drop, and I would experience relentless pain in my legs, spine and head in particular. I have joint instability, muscle weakness and overwhelming fatigue, which are caused by a variety of symptoms and conditions; Ehlers Danlos Syndrome (EDS), Myalgic Encephalomyelitis (ME/CFS), fibromyalgia, scoliosis, osteoarthritis, nerve damage, and dysautonomia which affects my blood pressure, heartbeat, breathing, anxiety levels, and even digestion at times.
As a single, professional, independent person who has always been used to having to look after myself, it was a particularly bittersweet pill to swallow to admit that my previous strategies for managing pain and fatigue were not working and I needed help. After an occupational therapy assessment, I (reluctantly) agreed to use an electric wheelchair in my workplace which would reduce the burden on my body, and it was purchased using funding from the ‘Access to work’ scheme run by Department of Work and Pensions (https://www.gov.uk/access-to-work). Even as a fully aware disability advocate for others, it took some real guts to get over my own prejudices about being ‘seen’ in the chair by my own colleagues! Eventually though, I discovered the freedoms that the chair gives me; it enables me to attend events and continue with my life despite my difficulties. I remember the first time I put it on full speed, it was so good to feel the wind in my hair, and not feel like the slow tortoise!
Now an ambulatory wheelchair user to the greater extent, I do have some ability to physically walk but it is very limited, so I use my wheelchair in many settings. I also use it at home when my pain levels are high and my home has been partially adapted via a disabled facilities grant (I’m in the UK) to make it easier to move around; though I suspect more doors might need to be widened in the future judging by the chunks I take out of the arms of my chair when navigating around!
The gains from using the wheelchair are that it saves me from experiencing further pain and fatigue, and enables me to do things with my family and friends that I wouldn’t otherwise be able to. I feel more included, I can go on dog walks with my friends, or a “roll and stroll” as I like to call it! I’ve been able to visit my daughter in London in the wheelchair on the train. I used assisted services (which were fantastic — thank you @British Rail!), and have attended some outdoor shows that I wouldn’t have done otherwise as the walking would have caused a big flare up in symptoms and left me in pain for days. Using the wheelchair has given me back some freedoms that I had previously lost, opened up my world, and made it more possible to go shopping, see friends, get around independently, and have some degree of a social life (energy permitting).
I have experienced varying degrees of acceptance within wider society, and indeed even within my own family and friendship support networks. Over the years, I have been shown sympathy and compassion, however, I have also been accused of fabricating my illness, been called a fraud, and been told dozens of times “but you look so well” or “you don’t seem ill”, “you are too young to be in a wheelchair” which quite frankly is just my cue for some eye rolling; its soul destroying! These comments are usually made after I have made some effort with my appearance, put on some makeup and styled my hair to make myself feel better. I smile and recall the real lesson of not ‘judging a book by its cover’.
There is still a certain amount of stigma attached to using a wheelchair. Re-negotiating the dating scene again in my middle age years, and challenge thoughts and comments from others about my ‘attractiveness’ due to using a wheelchair has been interesting to say the least!
Other negatives are issues around use of language and town and building planning. No-one wants to think of themselves as ‘wheelchair bound’ or ‘bed/housebound’, I prefer the term wheelchair user as I am not, ‘bound’ (and gagged?) to a device, home, or piece of furniture. Pavements are not always suitable for wheelchair use, particularly if they were designed in the Victorian era and have uneven camber with multiple surface repairs, there is a distinct lack of dropped kerbs in many places and many obstacles arise such as poorly placed public railings and gates that cannot accommodate a wheelchair though their width. A newer phenomenon is people walking along totally absorbed in looking at their phones, and literally tripping over wheelchairs coming in the opposite direction!
Unfortunately, even though I worked in a brand-new office building for a local council, it still wasn’t especially accessible. There were doors that had to be swiped with a security card that would lock again before I could mobilise a wheelchair into the right position, heavy fire doors without automatic closures on them requiring another person to assist every time I needed to use the toilet (how humiliating), disabled parking spaces on the opposite side of the building to the front door, and lifts that were often out of use meaning access to the upper floors was not possible. In addition to this, from a sensory point of view, the internal walls and desks were all reflective glossy white with bright fluorescent lighting and a striped carpet that made me feel nauseous due to my visual sensitivities. Despite feeding my observations back to human resources nothing changed, and eventually worn down, I left to pursue self-employment working from home which suits me much better.
Words such as ‘disabled’, ‘chronic illness’ or ‘disability’ are not inherently ‘bad’ and should never be treated as such. Often, people are afraid to even look a wheelchair user in the eye when out in public. I have even experienced people asking my friends what I want to drink rather than addressing me directly, possibly assuming I have an intellectual/learning disability as well as a physical one; even if I did it would be nice to be treated as a fellow human being with a voice and opinion of my own.
Judgement can still come from others; in my case for example, curious looks when I am standing and moving to mobilise my chair out of my adapted vehicle. No-one knows someone else’s medical conditions just by looking at them, and likewise they don’t have any right to challenge or harass them for it.
There is a further thorny issue as an ambulatory wheelchair user if you happen to be in a plus size body. People may assume that you are using the wheelchair because you cannot weight-bear for your body size, rather than because your health condition requires a mobility aid. Certainly, being less mobile due to physical disability or illness can impact on a person’s ability to balance their weight management. However, generally speaking (and there will always be exceptions to this) and in my opinion, excess weight itself is not usually at the root cause of the person’s mobility or illness issues but rather a side effect of it; though of course carrying extra weight could increase physical pressures on the body. Being in chronic pain or experiencing crushing fatigue or depression from being restricted can also be a trigger to over-eat (particularly high fat/sugar/carbohydrate food). For some people it might be one of the few things they still have control over; which of course creates a cycle of despair in itself (this is a topic for a future article!). Even those in the medical profession can appear to be focussed on weight being the cause of medical issues in patients, rather than something that has occurred alongside it. This can skew a consultation as the attention is being channelled into the wrong direction, leaving the patient feeling gaslighted and unheard. Whilst the body positivity movement has been welcomed by many plus size people and helped to campaign for change in society’s attitudes and assumptions, sadly many disabled or chronically ill people have difficulty advocating for themselves, and asking their doctors the question “putting my weight aside, what are the treatment options for my medical issue?”.
There is nothing more frustrating than being asked to explain your physical (or mental) health to someone else, not feeling accepted or even vilified; this is a form of ableism. We do not require able bodied people to disclose their personal information to complete strangers, yet this is often demanded of ambulatory wheelchair users and those with invisible disabilities — though we don’t have to give in to this pressure or explain ourselves in any way of course! This kind of lack of understanding often happens when using accessible toilets and disabled parking bays. People are challenged or accused of not being disabled ‘enough’, with well documented cases being available for viewing on You Tube and other social media sites.
As a neurodiverse person in several minority groups and with a disability, I am used to being in the ‘other’ category, not fitting into neat boxes on official forms, and find that my ‘otherness’ gives people an opportunity to question their own views of diversity. I’ll happily debate with people now I’m at a point in my life where I accept my conditions and realise that in-fact diversity can be as much a gift as a limitation. However, for a newly disabled or chronically ill person this might not be the case, and being challenged about the ‘degree of their disability’ could be devastating and destroy confidence.
For the chronically ill/disabled person, it is really key to try and remain positive where possible, and to make time for things that create some joy in life. These can be the simple pleasures of going outside to experience nature (in a wheelchair of course), chatting to friends, planning ahead for days out, and generally making the most of the life we have.
Whilst people may critique us for ‘giving in’ or ‘submitting’ to an illness by using a wheelchair, and may even offer a string of alternative solutions (which normally require pushing beyond one’s capacity) it is important to remember that we are the expert of our own bodies. No amount of healthy eating, yoga, special herbs, or new exercise regime can cure many of the chronic conditions that people are living with today. Yes of course some lifestyle changes can help, but they are not the yellow brick road to wellness in many cases. Taking control of your own mobility by using an aid such as a wheelchair or scooter is in-fact a liberating experience and may open up your world. Many places now hire aids for short term use (i.e., country parks, leisure facilities and shopping centres); go and experience these for yourself before committing to any major purchases!
It’s time to dismantle the stereotypes we associate with invisible disabilities and for ambulatory wheelchair users. It is for these reasons that we must all strive to educate, encourage and advocate for those who experience physical access issues, to try and create awareness of inclusivity and diversity in our population. Nothing will change in terms of physical access and public perceptions unless we keep raising the flag!
Awareness is key. Let’s open the conversation, spread positive messages and accept everyone for who they are. My hope is that by telling some of my story I can raise awareness and help others; after all ambulatory wheelchair users just want the same independence and freedom’s that everyone else enjoys.
Written by:
Nicola Sarsfield
External links to internet resources are correct at the time of publishing this article (31.03.2022).
