Life as a disabled person - Do We Belong?

What I'm thinking when you are disabling me.

A series of paintings illustrating phrases which go through my head when people ignore me, speak down to me, don't provide access or otherwise disable me.

Trying to live an ordinary life as a disabled person is difficult, but it's not the wheels or the canes or the hearing aids that are the problem, it's society and it's lack of accessibility and understanding.

It's not sad that I use a wheelchair, these wheels are my freedom. Without my wheelchair I would be stuck in bed all the time. Similarly my PAs allow me to get out and about despite my vision loss, but that doesn't mean I can't be independent - they literally enable my independence.

I'm a person, not a wheelchair. It's amazing how many people will speak to those people with me and refer to me as "the wheelchair". My friends, family, PAs and I will all bristle at this sort of question because I'm a person who you should communicate with directly. I have similar issues when I tell a stranger I'm blind, they may decide to speak to whoever I'm with, again that's not appropriate.

I'm not a child you know! Infantilisation is the act of treating an adult as if they were a child, even when their age or maturity does not warrant it. This is surprisingly common and unbelievably insulting to everyone who is on the receiving end of it. Always assume that the disabled person is an adult who can communicate with you; if we struggle then we or the person we are with can assist.

Am I invisible?

I'm not even joking about how often people walk into me all I wheel about in a beast of a wheelchair. Of course this has got worse as more people walk around looking at their phones, but it's always be an issue. If you walk into me then there's much more chance that you will be hurt than I will so it's worth keeping your eyes open. I have many visually impaired friends who come across the same issue but for them the chance of them being injured are higher. White canes or symbol canes are designed to help visually impaired people access the world safely, but everyone needs to be aware of where they are walking or cycling or driving.

No I don't have a license for driving my chair, so you better watch your feet.

Lots of people aren't sure what to say to disabled people and often make jokes. Many disabled people get annoyed by this which I understand, but I tend to think that it's an issue of people wanting to say something and not knowing what. This comment about "license to drive that" is very common on cruise ships and I always smile and say "no, so watch your feet".

And what's wrong with you?

No one needs to disclose their health or disability to a stranger, so please don't ask us why we are disabled.

The only caveat to this is that I encourage children to ask me questions because it's only by normalising disability that the next generation can become more inclusive. I will happily tell a child that my brain keeps forgetting to tell my legs what to do.

Feel free to talk to me directly.

Out of my way, I'm wheeling through.

Let me pray for you to be healed.... Of your ableism

I can't tell you how many times I've been offered prayer on the street, or in churches that don't know me. I don't mean offered prayer as you might invite anyone to receive prayer. I mean "let me pray for you to get out of your wheelchair and walk" or "let me pray for you to see" or worst of all...."if you believed then you would be healed!"

I believe in the power of prayer, I am happy to pray for anyone who asks for it. I completely disagree with going up to someone disabled and saying they need prayer. It is absolutely not ok to tell someone that they are disabled because they don't believe.

So here I am today reminding you that if you think it's ok to pray for my healing without me asking then you are the one who needs education, healing and prayer.

It is work saying that I often ask for prayer, but not for "healing of my disability". God has blessed me with the most amazing healing about my disability - I am healed of the bitterness I felt when I became disabled.

And God said "let there by I access" and it was NOT good!

This is a riff on one of the most famous verses from the creation story "God said let there be light and there was light... and it was good."

I wish wheelchair access was good and consistent and actually enforced. I wish provision for blind and deaf people was provided in every church. I wish all disabled people could feel welcomed and comfortable in church. It's not just about getting into buildings and businesses, but also about ensuring everyone can access the facilities and activities within them.

I can't ever just turn up to somewhere new, I have to research, send emails, ask for photos, check reviews and still end up hoping that I'll be able to access the place and use the toilet. This is the reality for wheelchair users and it's not good enough. Some places are amazing, usually thanks to the building owners and their understanding about access. New buildings have to have wheelchair access but even then it's not always great. Old buildings are often completely inaccessible and many blame the age of the building, even though access is almost always possible with a bit of attention, thought and good design.

If you want to help improve access for disabled people you can do one simple thing.... Ask about access when you go somewhere. It might seem like nothing, but every request increases the awareness that businesses should be fully accessible.

I'm disabled, not broken.

I don't need pity, I need access.

My body might not be well, but my life is still full.

I am more disabled by the lack of access in society than by my body.

I'm as entitled to be here as you are.

Please make space for me to join in.

Accessibility provision isn't a "perk" it's an attempt to level provision for everyone.

If disabled people can't access an event or building then you are actively excluding people.

Our relationship?

Absolutely NONE of your business.

Is he your husband? Your carer?

Is she your friend or your PA?

I get asked these questions quite frequently, and my family and friends and PAs get asked as well; but why? Do people ask family members and friends of non disabled people? I think not.

Disabled people have friends, loved ones, lovers, children, grandchild and carers or PAs.

Oh really, Kale, I MUST try that instead of my medication (NOT).

(This painting is inspired by Dr Bex Lewis, never forgotten.)

Yes I've tried every single thing I can to be more healthy, yes even the crazy things, and I'm constantly reading new research to keep on top of emerging treatments; so although I know you mean well, please do not suggest random ideas which you've read about. Instead let's have a conversation about how we both try to be as healthy as possible. You never know, I might have ideas that could help you.

Just one little step?

Oh good, I'll just levitate!

Spoiler: I have learned to levitate yet!

Yes I'm entitled to use the disabled toilet/ disabled parking etc

No I don't have to tell you why.

This is particularly aimed towards those who assume that people using disabled toilets or parking MUST look disabled in order to be entitled. This isn't the case; the vast majority of disabled people are invisibly disabled. If you are in doubt if someone is entitled then I suggest you give them the benefit of the doubt.

No I'm not "soooooo inspirational".

Well I might be, but not because I'm disabled and out at the shops.

Disabled people are often subject to "inspiration porn" where by we are celebrated for doing the smallest thing because it is obviously so incredible. And sadly this is then posed against disabled people who need pity. But actually disabled people are as average as the rest of humanity.

How am I?

How long have you got?

I try not to say "fine" because it's almost never true. But if you'd really like to know then let's make time for a proper conversation.

Oh and I'd love to hear your truth as well.

And God said "let there be access" and it was NOT good!

This is another image of the same words further up.

...

This series was created to raise awareness and I am thrilled to be able to share that one of them was used to illustrate a talk given by Dr Naomi Jacobs on "disabled people's experiences of curative prayer" at the 2024 Society for the Study of Theology (SST) conference.

"Sneak peak of a slide below, featuring art by the fantastic Emma Major (thanks to her for kind permission to use it)."

...

I decided to widen this series to focus on the campaign for disability benefits and to include the reality of chronic illness, mental health and pain related disabilities.

Find heaven on earth

Where heavenly bodies

Share truth without fear

Share truth without fear

Honesty brings no judgement

Love will surround you

Love will surround you

When we live life together

Find heaven on earth

...

Do We Belong?

I have written many poems about my experience living as a disabled and chronically ill person, but I think this one captures it all....

In the shadows of glass and steel,

where laughter dances on sunlit sidewalks,

we sit in silence,

the world, a carousel, spinning wildly,

ignores us,

as we’re anchored to our corners,

invisible.

Knocking on the doors that lock us out,

each knock echoing forgotten dreams,

cities draw their lines in chalk and grit;

we are ghosts hovering between what is shared

and what is kept as guarded treasure.

Access denied,

a password unspoken,

bridges built with bridges burnt;

every smile slicing through air like blades,

they don’t see the invisible:

a universe wrapped in exclusion.

Each day blurs into the next;

the horizon shifts just beyond reach,

while you roam through streets painted bright hues,

I am here, with only imagination for company.

Belonging slips through hands extended wide,

like grains of sand,

the harder I grip,

the more it eludes me;

but still I breathe this stagnant air,

searching for meaning,

woven within quiet moments.

What do you know of being unseen?

To live behind phantom curtains,

our hearts beat bold,

a rhythm unsung,

yearning to join your parade,

with every heartbeat,

time stretches further between us.

We find solace beneath these roofed skies,

crafted from dreams yet held captive,

in these alcoves carved by circumstance,

invisible threads binding our existence together.

This isolation cannot shatter hope entirely;

though sometimes night creeps heavy upon my chest,

my heart too large for these four walls

reminds me,

I can still long to belong,

even if belonging means carving paths from shadows,

shadows cast deep,

by those who roam so free.

It is wonderful to share that this poem, alongside my paintings, has become my most requested poem by journals, magazines and even exhibitions about inclusion. It has been published in print in numerous magazines and articles and in 2025 became a video installation which has been exhibited in the UK, USA, Canada and Australia.

Do We Belong?

If you would like to share any of my creativity then please drop me a line.