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Being Abled Differently, Communication and Health

​Within the past 6 or so years before 2020, I have had my own version of close interaction with my country’s medical systems for one reason or another. I say my own version because as you will have noticed by now, I often write from my own experiences and observations. In sharing such, I hope others don’t have to face the pains I (we) did but also where there were joys to put a smile for there is hope somewhere, and in places we have failed, perhaps use this to do better.

​This time, I think about people who are abled differently otherwise known as disabled persons or persons living with disabilities (PWD). When life has you spinning back and forth hospitals and various medical facilities alongside a loved one, both of you get to be exposed to a lot of things equally getting affected by the number of people in different kinds of situations​.​ This would often do a serious number on both your emotional, psychological, and otherwise health because you see the pain, you can imagine the discomfort.  It’s literal to you, only that you are at a loss of how to make it better and that feeling would always hit differently.

​However, when you take a moment to look around you, there are other people who besides being unwell, have a specific physical or otherwise challenge that makes it even more painful and difficult to comprehend. Perhaps around you,  some facilities and aids that could help make their life slightly bearable such as ramps, lifts but there’s this one group that often falls through the cracks of the health system among many others. The mute and deaf.

​In other platforms such as news channels and such, we are likely to have a sign language interpreter in a little corner somewhere. Even I who often wears glasses have to strain extra to see. In other programs, the little window would probably go to rest until the next news hour. Yet communication is important and it’s only as good as it’s the ability to reach all audiences. Only then do you get feedback and know what to do. But life for a deaf and mute person is a never-ending broken telephone assuming information even gets to them in a friendly way. 

Let’s think about COVID and it’s realities for a moment. Life and many engagements have moved on-line. We are receiving never-ending invites to some kind of meeting. Zoom, Skype, Microsoft Teams, Facebook, YouTube live name them.  While this is pretty cool, channels of major consequence have failed to do one thing. Include a sign language interpreter among those panel screens. While you might get the language interpretation, on-screen there is no one to convey the message to the deaf community except for very very few platforms.

Out of random curiosity, I looked up WHO‘s latest briefing on YouTube to see if my observations were limited to a few experiences and nope. Not even there do they have such an interpreter yet these people exist. Sign language is an actual language and if we are going to translate for other people the least we can do is include it. The rest of us have the advantage of the ear and might google translate what we thought we heard. The deaf community has nothing to hear in the first place.

​How about masks design?  Are they friendly to this minority group?  Can the lip readers and people who completely rely on full facial expressions to understand anything we say relate to it? We may however argue that someone has innovated one for people who are mute which is great! Very brilliant in fact but it made me feel somewhat sad because it felt almost like an afterthought. It didn’t seem to be in the initial planning the same as the high taps and what not measures. No specific intentional guidelines in spaces where we hope intentionality as far as health should flow. But I guess there’s always room for creativity right?  At least now we have the clear shield type of mask.

Moving on swiftly. Let me help us sync this with a little story. Some time ago, I consulted for an institution that called me requesting I assist with some aspect of the planning for a Health event that was co-hosted by the Ministry of Health. Given my background and exposure, this was added value at a very much needed time considering the target group and objective of the event themed around Universal Health Coverage, Partnerships, and Innovation. I was handed the program to go over among other things. When I ran my final checklist, I realized we finally had nearly everything in place including entertainment except . . . A Sign Language Interpreter! You just cannot have such an event with such a diverse audience without one.

Frantic, I asked some of my teammates to recommend someone or an institution that revolves around such instructors. We couldn’t leave anyone out of this important conversation. Even if it’s one person catered for. I needed them to not only feel but also be part of the conversation. After all, the ministry had given all the support it could at the time and were pleasantly engaging. There couldn’t have been a better platform for everyone to have a conversation and chat the way forward with feedback from people in every space within the health sector. 

This is when I met a media outfit called SignTv Kenya I hadn’t known existed before. They run on YouTube and employ only people with various disabilities as their news anchors and such. They’ve reversed your usual view and experience. The person signing on the larger portion of the screen is a person who is in fact mute and deaf. The audio is done by someone else you probably will not see. The two gentlemen we met then, told us they had found that many people who are deaf and mute would likely also have some kind of eye problem so they would often wear glasses. However, even so, the little side screen allowed to them doesn’t even make sense because they barely see it.

The channel is so deliberate and inclusive in such a way that everyday news is presented by people of various disabilities. Impressively, they partnered with the Sustainable Blue Economy Conference 2018 to ensure all materials including the visual adverts could be communicated to the deaf community. It had not happened before. They also revealed that unless a platform intentionally includes PWD, then people living In these situations do not come out. They feel left out and in most cases, they are an afterthought.

Therefore, even if something seemed good for the general public they would instinctively assume it’s not for them because this is how we treat them. A special group of persons. Name your theme______ Children, Women, Youth, and  Persons Living with Disability. First of all, the subject doesn’t even include them they had to be singled out which means instead of being naturally accommodated and put part of programs and panels, they feel showing up will cause an inconvenience of sorts or a general waste of time on their part. Yet they are independent and can contribute constructively.

​I only had a few minutes to have a conversation with them however in those few minutes, I learned a lot. I couldn’t have been more glad for the inspiration I had that morning to make sure such minority groups were included. Because much later I thought about and said if I think differently about the inclusion of Youth now than I did ever before, then the same applies to people who are abled differently. Side events and sideshows for these groups have got to stop. I have come to find that unless it was a forum specifically for such groups, having them as ‘side events’ in the middle of an important conversation, where they can better be heard and help shape decisions at the main plenaries and ‘high level’ setting is a complete waste of energy and resources.

​Later on into the event, we had finally settled for two sign language interpreters to serve in shifts who did a fantastic job but importantly, they brought to the table the plight of mute and deaf persons insofar as the health system goes. This was one of the few sessions that nearly broke me because it brought home a lot of things. That of the many unknown faces we saw in our ins and out of hospital through those years, some were deaf and mute. Almost like a child completely unable to communicate their pain or likely to get a wrong diagnosis because the health worker doesn’t understand sign language and perhaps the person’s aid is equally distraught​ to focus as they try to make things better for their loved one. Or maybe, the patient came to the hospital alone. No aid. 

​Although they are very few people with the sign language skill, Ms. Bridgette and Ms. Joyce regularly help in the communities they live in and often they are stretched having to go much further than their immediate geographical circumference to offer assistance. Many times, they get calls even at night (ops… curfew) to go interpret between a  patient and medic who had to be called for home care in a desperate moment only for the health worker to arrive and realize the patient is mute and deaf but for them to save the person they need to communicate.

In health, time is of the essence but more than once these two community s-heros and many others we probably do not know were called to rush somewhere in the middle of the night to find people in a panic, medic often feeling at a loss, the patient exhausted, giving up or already did give up. The person is gone!  More than one such but even more personal stories were shared where someone nearly got misdiagnosed because of the language barrier between the patient and medical personnel.

How then are we making our spaces intentionally inclusive? Our media? advertising? Our education? Can we have something like sign language as a mandatory course in something like Medicine? With the Police? Literally in all our service industries? I recall once being at an airport somewhere where a person who I believe to have been deaf approached me, stopping at a respectful distance while making it obvious that he was addressing me handed me a small pamphlet that provided a sort of sign language 101.

 In a nice way, he did look like a funny character. After being acknowledged, he took his bow before leaving repeating the same with the next person who might pay him mind.  I had a few hours to go and I could definitely read. If you had three free hours you had not planned on, how many places could you window shop or actually shop before you decided to find a nice comfortable place next to your designated waiting area? 

I had the choice not to pick anything from a stranger. Sure, ​he had waved what the pamphlet was but who knows? When I later got home that day I realized you know what? That was one person​ inviting me and many others into their world.​ ​Helping ​us​ recognize the need to understand such skills and be able to use them and help certain people maybe even make friends with them. Not stigmatize them.  Perhaps even save a life.

​Now​,​ I do not know much sign language to be functional maybe you do not either. However, you and I can create a better environment for such people and be more intentional where people abled differently are concerned. ​For one, I have taken to reach out to organizers of forums that I have attended with content I think great, targeting a wider viewership; where they may not necessarily have data of specific persons they are reaching by simply saying. ‘ Hey, that was really great. Next time please consider adding a sign language interpreter and please make sure they are not hidden in the background’.

Whenever you can, run the extra mile​ for someone else, do it.