Wednesday 26 September 2018

Things That Help

By Roiben

I can talk for a long time about my various conditions and disabilities and how they affect me. For the sake of those who do not know, I have Congenital Rubella Syndrome. This has led to a nice complicated list of conditions and disabilities including Type 1 Diabetes and mental illness.

In this article I am discussing the fact that I class myself as Deaf with a severe hearing loss, and the fact that I have a visual impairment. As a result of congenital cataracts I am completely blind in my left eye. My right eye does all of the work so is prone to getting tired quickly. I have diabetic retinopathy and astigmatism in my right eye as well.

I want to talk about five things that help me cope with these disabilities and get the best I can out of any given situation. Some are things I can do and some are things others can do to assist me. It is worth bearing in mind that disabilities are very individual and needs change from person to person. Some of these things are general and can be used across the board for people who have hearing loss or visual impairments. Others are individual to me and my experiences.

1. Lights, Camera, Action

I find good lighting helps in all cases. I need it in order to see properly. If it is dim or the light is not bright enough in a room, or a restaurant decides to dim their lights for “atmospheric” reasons, I will struggle to read text. I will also struggle to properly do things like cook and wash up. I remember in University Halls the light bulbs in the rooms were far too dim for me, so I had to have permission to have 100 watt bulbs put in.

In my flat now I have lots of smaller spot lights. These are great for ensuring there is even light across the whole of the flat, so I can see better regardless of where I chose to site myself. I often use a bright lamp and a magnifier with a light built into it for reading, especially labels and boxes for medications and food.

I also need good lighting in order to help with my hearing because I rely on lip-reading. I am one of the Deaf community who is able to lip-read, and not all of us can. However, it relies on being able to properly see the person’s lips and face. This means them not having windows or other major light-sources such as the sun behind them, and the room being generally well light and for that light to be consistent, not flickering or changing at all.

Because of this it is common for me to have to change where I am standing or sitting so that I can understand a conversation. It also means that when sitting at a circular table there will always be at least one person with a window behind them who I just cannot understand. It is also the reason I try to be the first to get into a meeting room or at a restaurant table so I can choose where to sit, to try to make sure the other people with me will not be in front of windows, flashing light decorations or other such annoyances.

2. Flexible and Adaptable

The second thing that helps is to be flexible and adaptable. This means me being flexible, to work with what I can do and make the best of it and to adapt to the various situations I am faced with. I also ask that the people around me are flexible and adaptable in order to help me. For example, if I am not understanding something you are saying try to rephrase it, or better yet adapt, and write it down or type it out on your phone or computer.

Also, for my vision I tend to need to walk on the right hand side of whoever I am walking with. This is so that if I am looking at them to lip-read what they are saying I can still see what’s going on around me with my right peripheral vision. If I am forced to walk on the left, I can look at the person but I will see nothing around me and often end up walking into things. This means the person I am walking with needs to be more adaptable to accommodate my needs.

3. Patience, a Trained Necessity

The third thing is patience. I often get frustrated with myself for not being able to understand something being said, or because I find navigating new places completely terrifying. Over years of mistakes and mishaps and much mental and emotional upheaval I have learned to try and be more patient with myself. This means giving myself time to get around and navigate a new area so that I can be more careful and less likely to fall over. It also means not putting undue pressure on myself to get things right, straight away, every single time.

I also ask and expect the people around me to be a little patient with me. I am well aware how frustrating and annoying it can be to have to repeat yourself, to have to accommodate my communication preferences and to allow me the time to figure things out. However, doing so helps me more than you may realize. It makes me feel more of a worthy human being than being told something I didn’t hear “doesn’t matter” just because the person doesn’t want to repeat or rephrase.

Still on the subject of patience, I am not a naturally quick walker. I take small steps and I have little legs and a dodgy hip. This means I don’t get around very quickly at all. Walking with me can involve a little foresight and patience. I am all for apologizing for this, and am well aware that many people would love me to walk quicker. However, I can’t and I don’t. If I am using my cane I have to ask for even more patience and “put-up-with” from the people I am with. I am told the constant-contact method I use with the cane makes it noisy (sorry, I can’t hear it) and I understand that walking with someone using a cane requires a bit of getting used to. So, the foresight is to allow me more time to get somewhere, and the patience is to not get frustrated that I am not able to meet your, or your guide dog’s, natural gait.

4. Concentration Exhaustion

In fourth place is the awareness that I get very fatigued. This is something for me, to bear in mind and plan for and compensate for. It is also for others to be aware of and accommodate for. Because of my hearing and eyesight I put in a lot of effort and concentration to complete the kind of everyday tasks that many people do not even need to think about: tasks like communicating, getting around, paying attention. For me, these things are frankly exhausting.

For my vision, I am often putting in extra effort to try to judge where people are and to pay attention to my cane’s feedback and my route so as not to walk into things or fall over. For my hearing, it takes effort to lip-read. A good lip-reader gets about 30% of the conversation from lip-reading alone. Making sense of the whole sentence and fitting the jumbled pieces together in your mind is hard work and like any hard work it is tiring.

It is worth being aware that I may need a break, I may take time out or leave earlier than I would otherwise. I get tired quickly. I get headaches and my eyes are often strained from focusing and concentrating. It is not because I do not want to be where I am. I enjoy my work and I love my friends and family. My zoning out or being tired is not from a lack of enthusiasm. Quite the opposite; it comes from the effect of having put so much effort and enthusiasm into those situations that my mind and body eventually say “enough, I’m done”.

5. There Is No Magic Fix

Because of my various disabilities and conditions I am regularly faced with people who seem to want a “cure” or a “fix” that would make me and others with disabilities “normal” (whatever that is).

I am so often met with people who, when I fail to understand them, ask if I am wearing my hearing aids or if they are working okay. The point here is that hearing aids are not a magic fix. They do not make me suddenly “not Deaf”. They simply make the sounds around me louder. They are a microphone and volume box sending sound waves into my ears. That is all. I am still Deaf. I still have sensorineural and conductive hearing loss in my ears. These mean that the sounds I hear are difficult to distinguish and understand, even with hearing aids. This is why I rely on lip-reading and context and knowing people and how their voices sound. In short, most people could be speaking Dutch for all I can understand them from hearing alone. I can tell they are talking, that is about it.

Likewise, my glasses do not make me suddenly able to see everything perfectly. Glasses are a common thing, but I still get people who do not understand why even with glasses I still need Large Print and am unable to see things further away. Glasses can only correct my vision up to a certain point. Beyond that, there is nothing that can be done.

I once had an ophthalmologist try incredibly strong lenses for my left eye. I got so little out of them that I said “No, thank you” to the offer of prescribing some for me. My glasses correct for the astigmatism in my right eye which helps my eyes to focus a little more, both for distance and for reading. I also have some correction for reading, because I do a lot of it. However, even the optician will say that they can’t fix everything. They are never going to be able to make me able to see small print without a magnifier. There is a good reason I don’t read newspapers, or magazines, or normal size print books anymore. I can’t. My glasses can’t fix that.

So, what helps? Please, be realistic. If I tell you I am Deaf, or visually impaired, believe me and don’t look for a way to make me “normal”. Don’t start recommending laser eye surgery or a cochlear implant as the next best thing that I absolutely must try as it will “cure” me. For one, they don’t suit my particular situation and for two, they are not a cure. They won’t magically make me hearing and able to see as clear as day.

Likewise, stop assuming that just because I have my hearing aids in I can magically hear everything as well as you can. They don’t work like that, they never have, and I have used hearing aids for a long time. I know they are better now than they used to be but they are still not a fix. For me they are better than going without in most cases, but sometimes frankly being without them is better.

Things That End

Although this is just a small selection of things that help, and there are a whole host of others out there, I think it is a worthy selection to start with, to work with and to use. All disabilities require an awareness of what can help and I feel those I have discussed here cover some of the main ones. They are very much individual to me but you can work from here to see how these can be transferred and adapted for other disabilities and other people.

The point I want to make is that there are many things that can be done, both in terms of helping yourself to cope and make the most of what is possible, and helping others to do so. It just takes some time, adaptability and patience. If you are not sure what may help, ask. Ask the person themselves. There is a good chance they will know from their own experiences what works and does not work for them. I am the same. If you ask me what can be done to help I am, in most cases, more than willing to let you know, or to give some pointers for the given situation.

So, let us try to help where we can. Find out those small things that can be done to help others, and to help ourselves, cope better with living in this world and getting on with each other in the process.


About the Author

You can find Roiben on Twitter (@roiben).


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