When someone isn't ready to call themselves disabled

For the first two articles in this series, see: "My church friend has become disabled: What do I do?" and "How to support a church friend facing disability".

In this, my third column on supporting people when disability arrives in their lives, I’m going to be looking at the issues around personal denial of a disability.

Personal denial of a disability

To begin, I’m going to tell a story from a conference.

On the access table were various large-print and Braille resources – the conference information, the programme, song words and more.

Not many of the large print resources were used. I had conversation after conversation with people who needed them and were qualified to use them, but said constantly that they weren’t one of those disabled people – when actually, they were. It’s never said in a derogatory way, just a statement that they think is fact.

The world at large has a stigma-ridden view of disability. Most also think that disability happens to other people and not themselves.

In the disability community we have a saying about this: “Disability is a club you can join at any time without being given the choice.”

As I’ve chatted with people who don’t think they’re disabled, when actually they are, the reasons why are quite predictable. The fact they are still independent, cheerful and not depressed by a decline in their vision, hearing or mobility appears to be the indicator that they can’t possibly be disabled. Meanwhile, they could be missing out on reading a favourite author’s book due to macular degeneration.

Others may be unable to hear and join in conversations like they used to, and missing out because they don’t think they need a hearing aid. Some may be having to say no to trips out because they know it would be difficult to take part because walking is difficult.

This is not just our older generations – it’s every age.

Those around them can see the issue, but sometimes pride in being not disabled becomes the barrier.

For some, it’s not pride but the fear of what people will think if they use a disability aid.

How do we help?

So how do we help our friends – who are struggling with certain elements of their health, who won’t acknowledge the need for accommodations, support or aids – slowly come to terms with the onset of a disability or chronic illness?

The first thing I would say is: confrontation is rarely the starting point!

When I'm working at events, I tend towards using neutral language rather than obvious disability language, such as, “If the words on the screen are a struggle, larger words are available for you. Larger because it’s easier to read when in a darker environment.” Sometimes I will follow up with, “They are not just for those with a visual impairment.”

This often starts people on the journey to finding helpful things because they “can’t quite see stuff,” rather than being frightened of using things created for those who are visually impaired.

I have a friend struggling to read due to glaucoma. This would qualify her for using organisations such as Torch Trust to buy the Christian books she wants to read, in a format she can see. I lent her one of my books from Torch Trust so she could see how books like this would help. She loved the book and has signed up to buy books from Torch Trust in the future. Gentleness and practicality were key for her.

It’s a slow process to acceptance, but being gentle can make sure a person's needs are met before they get to that place of realising that this is their new normal.

Acceptance

I’ve said in my previous articles that many won’t use mobility aids because it feels like giving up. With my own mum, we had many conversations about her using a walking stick. She would look at me, using a wheelchair or crutches, and say, “I’m not disabled like you.” I challenged her to a race, me using a walking stick and her without. If she could go faster, I said I would stop nagging…

I won. And after a few days she admitted it was easier to walk with a walking stick.

For her, humour was the key to accepting the need for mobility support.

If you know your friend well, you will soon work out how to approach those conversations. If your friend is a young lady who loves fashion but is struggling with walking, point out the snazzy walking sticks that would match her favourite outfits. This is something I do, and it opens up many conversations about disability when people see that my walking stick matches my shoes!

Changing the narrative

Having said all of these things, the biggest help would be changing the narrative around disability.

Make it positive, have people speak at your church who have a disability – any disability. Have people on your teams – children and youth, hospitality, welcome, pastoral and leadership – who have disabilities. Take away the feeling of shame or pity. Make it normal to use disability aids, and when people do, don’t comment unless it’s positive, such as: “Wow, snazzy crutches.” Make large print words look professional and have them clearly visible so people don’t have to ask for them – asking for them for the first time is hard!

Disability is part of everyday life; it’s good to see it like that in our churches, too.