Improving accessibility for people with hidden disabilities or mobility access needs

One of the benefits of my accessibility course is a monthly meeting for participants. Sometimes we look at an accessibility topic in more detail, sometimes we do a practical exercise that can be replicated in our businesses to make them more accessible, and sometimes we have a guest speaker – because I don’t teach on the subjects that I don’t know about and I’d rather listen to someone who can share their experience and add value.

Vie from Vieness Discover You Love You community interest Company came to talk to us about ways that business owners can be more inclusive and accessible for those with hidden disabilities. You can listen to Vie’s talk using the media player, or read her words below.

I don’t have a hidden disability, but I definitely relate to some of these points – as I often say, making life better for one group of people often helps several other groups too. But I also learned some things through Vie’s talk, which is why it’s so important to listen to those with other experiences so we can learn how to best meet their access needs.

Who am I?

“I look healthy. I look robust. I’m even prone to bouts of energetic activity, especially on a dance floor or when playing with children or when I am at my favourite place, Monkey World.

I don’t look disabled.

Unless I am using a stick, you cannot see that I may have difficulties moving around.

And, sometimes, when I am using a stick, you may see me participate in some behaviours that may seem peculiar and at odds with my stick.

I was born with a rare genetic skin blistering condition, Epidermolysis Bullosa, with subtype Simplex Generalised Intermediate. This means that I am prone to blistering and shearing on my hands, feet, mouth and throat; I can also blister in other areas where there is friction. For those of us with EB, our blisters can be big. Imagine the blisters you get on the back of your heel when you are wearing new shoes; for us, that blister could grow to cover our entire heel. There were many times before diagnosis that a blister would engulf all of my toes. Simple childhood scrapes would result in large patches of skin coming off and long recovery times.

Unfortunately, I wasn’t diagnosed until I was an adult, which meant that, for the first, almost thirty, years of my life, I was walking on heavily blistered feet, which has probably been a huge contributor to some of the other conditions I now have, degenerative spinal disease, thoracic outlet syndrome, bursitis, and peripheral neuropathy.

Every one of those conditions is an invisible disability. A person would not know I have them unless I told them.

This can make things difficult. I would imagine that, for most of us that live with disabilities, things are more difficult than for those that don’t.

What can you do as a business owner to be more inclusive?

As a business owner, which often includes organising events, I understand how difficult it is to be fully inclusive; to include every possible consideration for making an event accessible. But that doesn’t mean you shouldn’t try at all.

That hotel, surrounded by a natural forest is truly stunning! It’s a beautiful setting for any kind of event. As the event organiser, you probably drove there, looked around, loved everything, great parking.

But what about the attendees who are unable to drive? How could they get there? That beautiful hotel in the middle of a forest is unlikely to be accessible via public transport, especially if it’s not in the centre of a town. Maybe there’s a bus that stops ten minutes walk away. Great. If your mobility is good.

For me, to get to anywhere like that would usually involve at least two buses, possibly a train, and a walk, which would all take at least twice as long as someone driving in their car. And there are the elements to deal with as well. So, for me to get up and get somewhere like that for a 10am start, would mean leaving my house by 8.30 at the latest, hoping no buses or connections are delayed, being jostled on buses that are always busy at that time, then walking, possibly up uneven ground. I’m exhausted before I have even reached the event. Then two hours of schmoozing and the journey has to be repeated in reverse. So, for a two hour meeting, it would involve at least three hours of travelling time, and me being exhausted and unable to work for the rest of the day and possibly the next day or two as well.

What could you do, as a business owner? I understand that you wouldn’t want to change the venue, so make plans instead. Organise lift shares. Yes, the person that needs the lift could ask, but, one, as the organiser, you have more power, and, two, for the person with disabilities, it can be so demoralising to have to ask, to have to explain, over and over. As the organiser, you can start a thread, or send messages, and say anyone from this area please travel together if possible. You can say it’s an environmental effort; why use four cars with one person in, when you can use one car with four people in?

For bigger events, especially ticketed ones, consider the venue. Is it accessible by public transport? Does it have lift access? Are the seats tiered? Tiered means steps, which aren’t always accessible by everyone. Is there good leg room?

All of these things would be things that need to be considered for someone with most kinds of mobility difficulties. For me, having to walk up steps can cause additional pain; sitting in seats where I can’t move my legs causes additional pain. It’s also not too pleasant for people seated around me if I start spasming because of the excessive pain.

Do you want your attendees to go away, feeling uncomfortable, pained, and not having enjoyed the event, or go away knowing that you made every effort to be inclusive?

The spoons theory

Have you heard about the Spoon Theory? It says that those of us that live with chronic conditions only have so many spoons a day. Imagine we have twelve spoons a day.

Some days, we can use just one spoon for an event; other days, whether it’s due to lack of sleep, higher levels of pain, exhaustion from previous days’ activities, or because you are fighting off an infection (which is quite frequently in my case), it can take a spoon to sit up and get out of bed.

Making breakfast can take another spoon or two. Having a shower and getting dressed can take another two spoons. That’s five spoons before you have even left the house. Waiting for buses or other public transport, another spoon; travelling, another spoon; walking, another spoon; chatting to people (an enjoyable activity but it can be exhausting!) can be another spoon; travelling home, which is now harder because you are more tired, will be at least double the spoons, which is six spoons. The mathematicians amongst you will have worked out that that is 15 spoons. Which means you are already in deficit for the rest of the day, the next day, and possibly beyond.

So how can you, as a business owner, make things easier?

Ask!! And listen to the answers.

Know that one size does not fit all; know that every day is different even for those of us that live with the conditions.

Be considerate. As I’ve mentioned previously, arrange lift shares.

In addition to this, offer to get drinks and bring them to the table. Don’t make events all standing. Don’t judge us on how you see us on one time; as I mentioned at the beginning, I can have huge bursts of energy; other times I can struggle to walk.

Always remember that before we are anything else, we are human, with the same thoughts and feelings as you, and that we want to live life as fully as you do, whenever our disabilities allow.

You can make it much easier.”

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