Dealing With Disabilities - There Isn't Just One Definition

Culture

What do you think about when you hear that word? Are you imagining a particular disability? What do the people you’re picturing look like?

Disability is a big word with a plethora of meanings, but people’s perceptions often cover just a small slither of the conditions, impairments and limitations that this umbrella term encompasses.

People with disabilities aren’t a tiny community that you’ll rarely cross paths with; in fact roughly 21% of the UK population have a disability according to Scope. That covers people with visual or hearing impairments, learning difficulties, mental health conditions, epilepsy, cerebral palsy, amputations, spinal cord injuries, arthritis, dwarfism, Tourette syndrome and so much more that I can't even begin to list.

While the scope of what it means to have a disability is broad, everyone’s experience is unique and should be considered on a case-by-case basis. Some disabilities may require specific adaptations in work or life, but for many this is just part of their day-to-day and has been for a long time, so the affected individuals don’t need special treatment in every aspect of their lives. Remember, they’re a person with disabilities, not a disabled person.

A few colleagues have chosen to share their experiences with disabilities, whether it is something that affects them directly or affects a loved one, to help provide some insights into the impact it can have on everyday life.

Hearing Difficulties by Mark Siddall

When I was 7, my Mum thought I was ignorant. I would never respond to her when she spoke to me or feel comfortable conversing with groups of people. Apparently, the only time I would hear her was when she asked if I wanted a “Mars Bar”.

It was only when I had a hearing test at school that she, and I, found out that I was actually hard of hearing and would need a Hearing Aid (and a Phonic Ear, for a while) - and it explained a lot. Knowing about my disability not only gave me the devices to help, but access to resources and learning techniques, such as lip reading and body language reading.

Unfortunately, there was also a stigma around being hard of hearing / deaf (even though it is no different to wearing glasses to help with bad eyesight). That was one of the main reasons that I stopped wearing my hearing aid, along with working in a very loud environment (the right of passage bar job).

Today, I’ve learnt to live with my hearing loss so that it doesn’t affect my day to day life, in work or in my free time. But, there are some things that I still find difficult (especially in the office):

● A loud environment - Someone with hearing difficulties is probably trying a lot harder than you think to focus on the conversation. This can be made even harder in noisy environments where there might be a lot of other conversations going on, loud machinery, traffic, or music. This is even worse for hearing aid users as they simply amplify all sound, instead of allowing you to focus on the one sound you want to listen to.

● Being on the outside of a conversation - You might not know this but I also have what I refer to as a good ear (even though it only has 50% of normal hearing). That is why I always try to position myself to the left of a bank of desks, conversation or a person, so that my better, right ear is closer to what I want to focus on.

● Not being able to talk face to face - How hard have you found it trying to listen to people wearing masks recently? This is because not only is the volume and quality of the sound muffled, but because you cannot pick up on facial cues, such as reading lips and emotion. People that are hard of hearing rely on these techniques and often feel a lot more comfortable talking one on one rather than in a large group, and also struggle when someone turns away from them in the middle of a conversation.

● Tripping over words - Speech development and hearing go hand in hand. That is why some people who are deaf or hard of hearing can have speech impediments such as lisps, stutters and mumbling. I struggled with all of these growing up (which doesn’t help when you can already feel isolated from a conversation) but, even today, I can sometimes trip over my words and need a moment to compose myself.

● People shouting or talking slowly - When I wore my hearing aid growing up, people would shout or talk slowly to me. It’s was really insulting - I’m hard of hearing, not stupid! Unfortunately, it is still a stigma that hearing aid wearers regularly face. Just talk clearly and directly, at your normal volume and pace, and we’ll understand you (or ask you to repeat yourself).

Multiple Sclerosis (MS) by Charlotte Batters

MS is an incurable condition caused by the immune system mistakenly attacking the brain and nerves. Although it can be managed, it does shorten life expectancy and usually goes through a number of stages which result in increasingly reduced mobility. My grandma was diagnosed with MS in her 40’s. I’ve spent my life seeing her progress through the stages. She’s been through crutches, part-time manual wheelchair use, full-time manual wheelchair use, and is now in an electrical wheelchair as the only remaining movement she has is one hand and facial movements.

Although my tips seem obvious, you’d be surprised what people do when they don’t think about it…

Speak directly to them:

90% of the time, people ask me what she needs. Also, don’t assume they need your help to do anything and everything. I’d suggest you do the opposite and assume they don’t need your help at all unless you see them struggling, then ask whether they need any help.

Don’t move their chair:

Is the chair getting in your way? Ask them if they can move slightly. Just like you wouldn't pick a stranger up and place them to one side to get past them, don’t think it’s ok to just grab the handles and move them.

Tables tables tables:

The world isn’t designed for disability. Lots of tables aren’t high enough for wheelchairs to comfortably fit under, so if you’re booking a meal out ask the restaurant to save a table high enough. If you’re booking a meeting room, make sure the table is high enough. And day to day desk setups will probably need some adjustment too.

Wheelchairs don’t make you deaf:

Yes, some wheelchair users may have illnesses which do impact their hearing. But don’t assume from the off that everyone in a wheelchair needs extra adaptations from you.

Sit down:

If you’re standing up whilst talking to them, they are looking up, which - FYI - is much harder work on the neck than it is to look down. You could crouch. But I’d suggest that you sit where possible. It’s much more casual and sometimes crouching can come across a little patronising.

Don’t lean on their chair:

It's the equivalent of just resting an arm on someone's shoulder as you’re talking to them… don’t lean on their arm rests, don’t lean on their handles, don’t lean on their headrest. It’s invasive.

Endometriosis by Catherine Taylor

Endometriosis is a chronic condition where cells similar to the ones in the lining of the womb are found elsewhere in the body. This causes inflammation and chronic pain which can affect other pelvic organs and fertility. Having surgery can remove the growths but it is highly likely that they grow back within a few years.

In the UK, it takes on average 7.5 years to diagnose endometriosis. From personal experience, previous doctors often mis-diagnose or even dismiss the pain and “say it's just a painful period, take a painkiller.” After perseverance, I eventually saw an endometriosis specialist gynaecologist who gave me the diagnosis very recently. Despite feeling scared about what the future holds, I was relieved to finally have a diagnosis.

Endometriosis affects each woman in a different way and for me, it's more than just severe pain during my period once a month; it affects me every day. From fatigue and sciatica pain to anxiety, it can consume your thoughts each day.

Over time, I have found ways to cope with the condition by using a walking aid, taking painkillers, heat pads and more recently, a nerve stimulation device.

One of the things I have learnt throughout my journey is the importance of recognising you can’t do everything you used to before the illness and its important to relinquish the guilt of not being able to do so.

A few things to bear in mind:

● For many women, endometriosis is not just a very painful period. It can affect the function of many pelvic organs (e.g bladder and bowel) and has been known to even grow on the lungs!

● If you work with anyone with a chronic condition, don’t be afraid to ask them how they are from time to time as it can be isolating for some people.

I hope by sharing my story, it can help someone going through a similar experience and/or help someone support a colleague or a loved one better.

Useful resources:

What can we all do?

Here are CTS Group we appreciate others. It's right there in our values! And as we all know, actions speak louder than words; but what actions could we be taking?

Good news! You've already started on the most important step by reading this far: Research & Listening. Everyone has a different experience with disabilities, so by researching different ones and genuinely listening to other as they explain their stories you're increasing your awareness and your understanding of others.

Next up, don't forget to Ask Questions and be receptive to the answers. With hidden disabilities making up approximately 80% of all cases, don't make assumptions about the abilities or limitations of others based on what you can see. Instead, ask if someone is comfortable to do something and be considerate if they request any extra support, no matter how small. Remember though; it doesn't need to be the Spanish Inquisition, being too pushy could be seen as patronising, and that person has the right to keep their information private, so keep it casual.

And above all, Treat Everyone with Respect. Don't let stereotypes change your treatment of a person with disabilities (or anyone for that matter!), just treat them as the individual that they are.

But why stop there? There's lots more we could all be doing so use this blog as a starter for 10 and get thinking. What can you do in your daily life to help make things easier and more inclusive for our friends, family, colleagues or neighbours with disabilities?