My experiences as a totally blind and hard-of-hearing person, part 1

One thing I have struggled with as a person with both total blindness and progressive hearing loss was which community to identify. I hope this part will not sound too condescending by any means. I have challenged blind people to think about how they would function if they lost their hearing one morning, and, to be honest, a lot of them would be devastated to the point they would want to kill themselves. This was usually the result of when someone asked the usual question of if you’ve been told that you could’ve gotten surgery to restore your eyesight, would you go for it? Many blind people would never do it. Yes, some people would be devastated if they became deaf, but just like how they like being blind and consider that to be a part of their identity, they would respect that I could love being deaf blind, and that it is a part of my identity. Still, many blind people use their hearing a lot, though, and have echolocation.
Most people say it is easier to be deaf than it is to be blind, but when you are already blind, you cannot see yourself as being deaf. No two disabilities are superior to one another. There is a lot of cruelty and internallised ableism towards deaf-blind individuals by some blind people, but I know that not all blind people are like that. I mean, a lot of blind people hate being asked how they use a computer if they cannot see. Likewise, those same blind people who hated being asked that asked me, how do you do music if you have trouble hearing it? It is because they view their hearing as everything; they would just simply collapse and feel like they can never get up again. That is why I remind them to be more open and inclusive towards our siblings with combined disabilities that have blindness in addition to the mix. Some people I’ve talked to agree that deaf-blind people are always left out of accessibility initiatives. Still, people in the blind community continue to refer to this blind gentleman named Kennith Jernigan whenever they argue about codependence, interdependence, independence and dependence, and he wrote the well-known banquet address called The Nature of Independence in the nineties. However, I would argue that The Nature of Independence was written from the point of view of someone who was only blind and married. It was not written by someone who was deaf-blind. It was not written by someone who was blind and in a wheelchair. It was not written by someone who was blind and had a severe chronic illness. It was not written by someone who was blind and had autism, Down’s Syndrome, or any other kind of learning, intellectual or developmental disability. Still, it seems that a lot of blind people, particularly those who are proud of their accomplishments, are overly ambicious and would consider relying on sighted or blind assistance as a sign of weakness or being inadequate. However, they do not seem to mind using guide dogs, even though a dog is not going to tell you what intersection you are at, or describe your surroundings to you. It also seems that although they do not feel comfortable taking another person’s time, they are fine with taking a lot of the dog’s time instead. This is where the cultural aspect comes in, because in south America, people are more likely to offer you assistance, whereas here in the US, people tend to be hands-off. Also, I don’t like it when SSPs are taught to act like they’re your slaves or something. I mean, if I, the client, asked my SSP what their opinion was of something, they’d say, ‘It’s up to you.’ SSPs need to be treated as human beings, too. Yes, I can understand the whole thing about blurring the line between professional and personal relationships, but don’t forget that SSPs can also be family members, relatives, close friends, neighbours, etc.
A lot of members misquote it… I’m talking about the Nature of Independence. It probably did result in people believing that they are better than I for not pre-boarding an aeroplane and things like that, but I don’t think those people actually read it.
Whatever happened to the concept of work together, help others, and all those things we learned growing up? Besides, it is not a crime to ask for help, and sighted people use assistance all the time, so why should blind people be an exception to the rule? They are so anxious to show society that they can do anything. Besides, Kennith Jernigan did use assistance at conventions, and other members criticised him for going guided travel. Oh, and how can we make talking ATMs more accessible to deaf-blind people? How about movies with audio descriptions? Seriously, deaf-blind people are being left behind it is not even funny. I definitely also want deaf blind people to be included in making appliances more accessible. I have noticed that a lot of things talk now, but if you are deaf-blind, that doesn’t help. So many blind people say they want to make things accessible, but what they really mean is that they want those things to be accessible for only themselves in the current moment. That is because they are not following universal design. Not all deaf-blind people can read Braille due to barriers related to a learning, intellectual or developmental disability. Deaf people who do not develop oral language skills almost never develop reading comprehension beyond the sixth grade anyway, but still. I would imagine that deaf people are the same where they only think of and include deaf people who meet societal expectations in every other way. I think interfacing with a kiosk using an accessible app to scan the QR code, use near-field communication, etc would benefit a lot of people.
Europe uses spinning cones to tell deaf-blind people when it is safe to cross streets. Australia uses relays that vibrate and give tactile feedback. Japan uses Braille signage that is printed directly on railings where they would be extremely conspicuous to anyone using them. I do not enjoy being independent as a totally blind and hard-of-hearing person. But I truly believe we are all interdependent. I have written very cogent remarks here. Perhaps the most important part about being independent is knowing when and when not to need assistance, as well as being extremely self-reliant. Be lucky that you have what you have, and use it to the fullest. Do not depend on anything too much as everything has its time and purpose.
Older people might say that I’m not as independent as they are because I rely on my phone too much. I think that a lot of people just get stuck in the rebellious independence stage discussed in the speech. Other blind people have told me I wasn’t as independent because I used audio descriptions at the theatre, and while I don’t use a guide dog, they would’ve probably criticised me for it, as well. I am not perfect by any means. Yes, people do not want you to use guided travel at training centres because you are there to learn and develop new skills, but even when you are out of it, they act like you should be at the centre forever. Kennith Jernigan agreed that the way we do things while we are in training is not the same way that we would do it in everyday life. For example, if I took a college math class where calculators were not allowed, I would have to learn how to do everything by hand so as to master new techniques. But, when I am out in the field, it would be ridiculous for me to continue doing it this way when I can have a computer do that for me in the blink of an eye; the skills are simply an adjunct. Likewise, it would be foolish of me to criticise others for using calculators and accusing them of taking shortcuts. They would have every right to say that I was being altogether arrogant in that regard. Of course, one could argue that if the power went out, or the batteries stopped working, then your math skills would definitely be of service. They would say the same about blind people relying on their devices that could fail one day, and since the brain almost never fails, they should always rely on that. I am really good at technology, and I notice myself almost never using a reader to do things such as manage my finances and read my mail when other blind people say that they use a reader for these things all the time. I don’t think of myself as more independent than they. It is just easier for me not to have to rely on a reader most of the time. I might decide that I’m not going to follow this person, or I’m not going to go cited guide because I really want to learn about this area, and I really want to develop some new skills. Sometimes it’s also about priority. For instance, if you need to be somewhere as fast as possible whilst having a conversation, it might be perfectly fine to go guided travel because you probably already know the layout of the environment. Even sighted people do things differently depending on what their priorities are and how they want to do it.
I believe the problem is that a lot of blind people act like they want everyone there to be blind. Well, that is exactly like me saying that everyone who is only blind should be deaf-blind. The problem is that when many people in the NFB, as well as many people out of it, say blind people, they only think of and refer to people who are just blind and have everything else that meet societal expectations. They sometimes forget how diverse the blind population can be. If I said a sighted person, I could be referring to a sighted person with autism, a sighted deaf person, a sighted wheelchair user, etc. The same should apply if I said a blind person. Some blind people want other blind people to experience what they could never have.
Actually, some people have started thinking about this because it is common for hearing to deteriorate with age. Also, some people lose their ability to know in which directions sounds are coming from, whether due to allergies, migraines, or what have you….
That is why I value Helen Keler’s philosophy more, because she knew what it was like from the inside. I was not allowed to have an SSP at several NFB-sponsored activities, and whenever I attempted to use guided travel, someone would come up, I do not know who, and, gently but firmly, separate me. I got lost numerous times because of that, plus I could not hear the crowd in a noisy environment, or I might hear them, but it would later turn out that I would be following the wrong one. I didn’t have a cell phone back then, so I had no way to call someone for help. Some might say I was lazy and did not want to try hard enough, but as I grew older I was able to justify my need for additional accommodations on the basis of having severe hearing loss, especially around 2013 and on. When I discovered HKNC, it was like a whole new world has sprung up before me with a number of countless possibilities. I know that the NFB has been changing in the last ten years, and that the Deaf-Blind Division has been created, but frankly, I would not deal with them until they can prove to me that they really want to accommodate me; not only for the blindness, but for the severe hearing loss I have, as well. It is not just about me. It is about my fellow deaf-blind friends, too.
I don’t know if I can ever have completely positive relationships with other sighted people, or even blind people, but I want that for other blind and deaf-blind people. I want them to be integrated in ways I might never be able to have. I want them to be able to meet sighted people who believe that blind and or deaf-blind people could never have a job, and then have a meaningful and equal relationship with that person even though I can’t do it. My emotional feelings toward sighted people in general, as well as some blind people, and toward the whole situation basically make that impossible, but I’m glad that other people don’t share those feelings, and I don’t think they should. Logically, my feelings aren’t what I think.
Sometimes, blind people do need to be reminded that Deafness and other disabilities affect how you do things, but I think the key point they are making is that BLINDNESS itself does not create dependence. And yes, sometimes that can come off as a little tone-deaf when they are dealing with people with other disabilities. But it is all attitude and all problem-solving to figure out what will work for you. You can try different things, be open to new ideas and be a CAN do person, or you can make excuses, say no to everything and be a CANNOT do person. Not everyone is going to be able to do everything by themselves all the time, and I do not think anyone expects that, but I think they wants you to at least entertain the possibility, play around and experiment with it, and see how far you can go.
This is a very interesting perspective of blindness. When someone is blind, it does not make basic tasks impressive, when someone is deaf, it does not make basic tasks impressive, but because some people do not understand what it is like to be both, it makes them think basic tasks are impressive, even know it is just combining 2 things that are not impressive. That is very strange. The lack of having experience is definitely a the leading factor for different mindsets. I know you performing basic tasks is not impressive, but the lack of experience makes it hard to think outside the box. If I could not do basic tasks extremely well, I would not have been able to go on the internet and share my story, so it is very hard to think about what someone has done and then use that to say, oh, well because they did this, then everything else before that must be easy to them. Instead of using what we have seen you do, we use the lack of our own experience to determine what is and is not impressive or easy for you.
So, to drive my point home, I might blow the whistle by recording what goes on at these training centres and take a vow of silence and only communicate in sign language. Or, I might just do an expose on them. How, I know not, but I swear I will do it some day.

Published by HeavenlyHarmony-KJ7ERC

Check out the About Page of this site to learn more about me. I am a new ham radio operator, and you can find my call sign on my profile. I am completely blind, severely hard-of-hearing, and an active member and participant of the LGBTQIA community.

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