UK Disability History Month: Mathew Baxter raises awareness of hidden illnesses

To mark UK Disability History Month, Business Development Support Manager Mathew Baxter shares his experience living with a disability and raising awareness of hidden illnesses.

With November being UK Disability History Month, I thought I’d share some of my own experience in living with disability, and in particular some aspects which some people can really struggle to understand, invisible illness and in my case, being an “ambulatory wheelchair user”.

Being “Disabled” is a broad umbrella term for which the Equality Act 2010 states: “You are Disabled if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”

Most of us can understand that just as people come in different shapes and sizes, so do disabilities.

Some disabilities are easy to see, and although most people can understand or at least appreciate some of the difficulties a disabled person might face, not all disabilities are as clear and apparent and if something is unseen it can often go unacknowledged.

These “invisible illnesses” or impairments can be far less obvious to the eye and whilst a person might look quite well on the outside, their disability might make it hard for them to do normal everyday things. Because of this lack of a visual indication or prompt to those around them, their struggle can often go unnoticed and unsupported.

Some of the obvious disabilities are easy to spot and people can be forgiven for thinking of the stereotypical symbol of a disabled person as depicted in the basic disabled person logo or icon, but the less obvious ones such as loss of sight, hearing or mental health are not so easy to spot.

Regardless of the level of visibility or obviousness, all people affected by disability face their own challenges both large and small, and none is any less important or any less difficult to live with, not least because of how obviously apparent it may or may not be.

With this in mind, and because the unseen can most often go unacknowledged and misunderstood, it’s all too easy for people to think of disabled people in some very polarised ways; breaking it down into the simplicity of those who can’t walk, and those who can; and there is so much more to it than that.

Let’s look at some facts and figures:

A recent survey shows:

• There are over 11 million people in the UK with a limiting long-term illness, impairment, or disability.
• An estimated 1.2 million of these use a wheelchair.
• Approximately 400k or 1/3 of these are ambulatory wheelchair users.

In addition, when surveyed:

• Over 50% of people surveyed think of disability as a permanent physical impairment.
• Each day, 180 disability hate crimes are reported in the UK.
• Nearly 40% of people surveyed say that the disabled are a social burden.
• More than 60% of people surveyed say that they avoid the disabled because they don’t know how to behave around them.

These figures show that wheelchair users make up a small percentage of disabled people in the UK at around 11%. However, they also show that prejudices are still found in some quite high numbers, and this is largely because of the lack of understanding of the needs and capabilities of disabled people and at times the lack of understanding of invisible illnesses.

So, what is an ambulatory wheelchair user?

An ambulatory wheelchair user is a person who is physically disabled and affected in their mobility. They may use a wheelchair to get about, but at times can still stand up or walk, albeit usually with aids such as a cane or crutches over short distances under the right circumstances.

In contrast, they may normally get about with walking aids such as sticks or crutches, yet at times may use a wheelchair.  In short, they get about using various aids appropriate to their needs at the time. And worth noting, their needs can change from time to time too.

As an ambulatory wheelchair user or “inbetweener” as I call it, I’ve had all sorts of responses to this. Most people can understand it without explanation but unfortunately, some still find this concept hard to understand and can be quite opinionated, abusive or even discriminative about it with comments such as “oh so you can actually walk?” or “oh, I see you’ve had a miracle today” ……  you name it, some people will think it’s all done just to get a better parking space?!?

These types of comments stem back to that stereotypical polarised idea of disability in which some people can wrongly assume that a wheelchair user has completely lost the use of their legs. This black and white view of use and none use just isn’t correct as there is quite a bit of grey in between.

Of the 1.2 million wheelchair users in the UK, approx. 400k or roughly 1/3rd of them are ambulatory wheelchair users and although they use a wheelchair at times, they can still manage to walk a short distance in the right circumstances, most like me, will still use a mobility aid such as a cane or crutches.

For me, my disability at times is obvious in the way I move, yet at other times or over a very short distance, the obviousness can be less so.  My condition in general affects my ability to stand, walk or even just sit at times and if not carefully managed can really affect my ability to cope well with the symptoms I have. Some days I am truly beaten by it, whereas other days, I’ve got more “fuel in my tank” as I put it and I can manage a little more than usual. At times, it can be difficult but using my wheelchair proactively when I need to, helps me to manage pain and energy that bit better, and it really does allow me to enjoy life a little bit more. (Actually, a lot more).

I’d like to say my wheelchair use has as easy an approach as “when I have a bad day, I use my wheelchair and when I have a good day I don’t” …. but it’s much more complex that this and tends to reflect pain, planning, pacing my capability and conserving the good energy I do have.  I will use it not only when I’m particularly suffering, but even more so in a proactive sense so that I may take part in activities which might exceed my very short standing or walking capacities.  It takes me from being incapable to capable, unable to able and allows me to get involved rather than sit another one out.

And so, in defiance of the Stereotype, and despite any negative comments I might occasionally hear muttered, I’ve not completely lost my mobility just yet and so I walk when I can, I wheel when I can’t. If I turn up on my feet, it’s not a miracle, it’s just a good day.

So, remember, not all disabilities are obvious and apparent, and some can be quite difficult to manage and understand. Just as a person with poor eyesight might use glasses to aid their vision, disabled people may use different aids to help them overcome their impairment. There needs may change from time to time but whatever those needs are, they are a great and necessary help in enabling the disabled.