My Experiences as a Totally-blind and Hard-of-hearing Person, part 2

Okay! Last time I talked about some of the social issues I’ve experienced due to my hearing challenges, and if you read my about me page, you’ll probably know that I can’t watch a lot of TV and films, which means that my perception of social dynamics might as well be static. I sometimes have a bit of trouble with the cocktail party effect. That’s basically when you are able to focus on one particular sound amid a bunch of other sounds.
Anyhow, I wanted to talk a little more about some of the auditory and technical issues I’ve dealt with, as well. First, however, I’d like to introduce you to a blind and hard-of-hearing gentleman who is pretty well-known among the blind community. Back in 2014, he wrote a blog article about how living with hearing loss has impacted his life to some extent, and what he has done to make up for it. Now hear this! The surprising thing was that I never knew he had a hearing loss in the first place, or that he also had the same condition I have.
‘Click, click. Is this on? Can you hear me? Hello? Is this working? Is that too loud? What was that again?’ These are many of the things I either heard other people say to me, or things I’ve asked of them. Some of them refer to using something called an FM system, which is a radio transmitter and receiver that operates on a frequency spectrum using FM without causing interference. The receiver sends this signal to a neck loop, which then sends the signal using magnetic induction much like how a guitar pickup coil works, to the hearing aid(s). This part of the hearing aid is called the telecoil. Sometimes I’ve used the FM system to spy on other people and do some eavesdropping. Although this post from Kids Health doesn’t have this, I remember reading stories from other kids about how they’ve taken advantage of their systems to tell their classmates when the teacher was coming back within range. This type of magnetic eavesdropping is more common than people realise, so to protect sensitive conversations, people usually go into a Faraday cage.
I first started losing my hearing at the age of seven, though it was barely noticeable at first because I’ve had perfect hearing from birth to about age six. Since I was born with a condition that made me prone to developing hearing loss, though, due to my brother’s having the same thing, I was later tested by the education service district’s audiology department when I first entered Kindergarten. Occasionally, I’d see my primary doctor, or someone at school would bring in an audiometer to this small room used for individuallised study. It was this big and bulky box with lots of buttons on it. The person running it placed noise-cancelling headphones over my ears and played a series of tones, some of them I remembered to be at 1000Hz, or 1kHz. Other times, they would simply insert a small probe into the ear canal and play the tones through it. Whenever I got ear infections, which was usually in my left ear, I couldn’t hear that tone at 30Db, I think, or maybe lower. They simply asked me to raise my hand corresponding to the ear they were testing if I could hear that pure sine wave tone. I also got a tube placed in my left eardrum to treat my otitis media on Tuesday, 9 December 2003.
I was always extremely talkative and was frequently dubbed chatterbox and other names I wish not to write here. I guess it is why, in later years, I became more afraid of being taunted for something I should’ve been free to do. A lot of people told me I never laughed, but how can you if you don’t know what people are laughing about? They’ve also criticised me for not yelling or making any loud vocal sounds. You see, part of the problem with hearing aids is that your voice may sound extremely loud to you, but it might sound very soft to others. Likewise, without hearing aids, you might speak up so you can hear yourself, but it might cause some people to cringe because you are speaking way too loud. And, because I come from a Spanish-speaking family, I never get to hear English on a daily basis except through books, reading the internet, and going out. Yes, although you could say English isn’t my first language, it is my primary language because I use it a lot more than I know Spanish, and it is because I know a lot more words and vocabulary than I know in Spanish. However, I rarely get humorous comments and sarcasm because I don’t often know by the tone of the situation, though this may work differently in writing. So, in elementary school, I went in every couple of days to speech and language pathology, either individually or in group session so they could better fine-tune my social and communication skills. After all, I’m pretty sure that’s the only reason I went in the first place.
Also, I never understood this until recently, but I remember an experience where I was supposed to give an oral presentation about a likely scenario that would occur five or ten years in the future. When it was my turn, I briefly talked about how I wanted to do something that involved using Braille Music, web design, and flying. At the end of my speech, the guy who facilitated the group thanked me, but he said something after that which I couldn’t catch, but I gathered from his tone that he wasn’t very pleased with my performance. That was in early April of 2010. Two years later, in December 2012, I was talking to someone about my fascination with my synaesthesia project, and the person at this party, who I actually met via some mutual friends, told me that they could tell how passionate I was because of the enthusiasm in my voice. In reality, it was because I had varied or modulated the inflection of my voice to sound less boring. While I may not have been conscious of it at the time, I am glad that I finally know about it so I can be sure to use that in leadership-related fields.
I got my first hearing aid for my left ear in Summer of 2001, and at that time, I remember experiencing tinnitus that sounded like the buzzing of a fly’s wings, or more like a sawtooth wave, though not as harsh. Some of them were around 325Hz, but the one I remember the most was one that I kept hearing in my left ear, which was around 265Hz. It lasted for about four months, and at one time, I thought it dropped about a semitone. Anyhow, I was first ecstatic for having gotten it, and that I could hear things just as well as I could hear with my right ear, but soon, I didn’t feel comfortable wearing it, mostly because I didn’t want others to know I had a hearing aid. I only wore it at school. I still had enough hearing in my right ear to not need my hearing aid at home. If you’ve read my other posts, you may have learned that I was bullied by some blind people for having hearing loss because I was the only one with it in our little clique.
In the summer of 2004, it was decided, based on a recent hearing test , to complement my setup with another hearing aid, which meant now that I had then developed bilateral hearing loss. It was evident by the audiograms that my right ear was better at perceiving higher frequency sounds than the left, so whenever I talked to people, I’d turn my head so that my right ear would be facing them, or i’d sit on the person’s left side. I’ve had some instances of diplacusis. That’s basically when a tone sounds slightly higher or lower than what you know it to be in the other ear. For example, if I played a tone of F-sharp4 in my right ear and played that same tone in my left ear, I’d hear a G4 instead. I didn’t know I had perfect (absolute) pitch until long after, let’s say when I was in my sophomore year of high school, but back then, this was what I had to work with. Occasionally, I’d wake up with a condition that felt like my right ear, usually, ducked the audio coming in. Sometimes I’d get a small headache and hear this strange buzzing tone, like one of those old dial tones at 120Hz, but with lots of high harmonics added. Also, frequencies at the high end of the spectrum are almost imperceptible, and voices end up sounding tinny. There has been some studies to see whether corticosteroids were effective at treating sudden sensorineural hearing loss (SSHL). I suspect it was maybe how oversensitive my tiny ear muscles were while I slept. I had a habit of sleeping with earbuds, so I could listen to various soundscapes while I slept, but maybe my ears thought they were too loud, so it tried to protect itself the best way it could. If you’ve ever experienced spontaneous ringing in your ears, this post from 2013 explains that the outer hair cells, which are used to amplify really quiet sounds, tend to vibrate on their own, sometimes causing a feeling of fullness or temporary loss of balance. Fortunately, there is a feedback loop that corrects this problem in a minute or two. About a month ago, I heard this tone increase in volume until it was nearly deafening. It was at around 975 Hz, and ten minutes later, everything got tinny again. What was more interesting was that anything that was sympathetically resonant to 975 Hz caused those hair cells to vibrate abnormally.
Another interesting phenomenon I noticed was that I could control some of the muscles, which I later learned were called the tensor muscles, and make sort of a click, click, click sound. It was perceptible enough that if I placed a microphone inside my ear, I could capture this sound. When I first discovered this, probably when I was five years old, I was afraid of having it and thought there was something in my ear that was causing it. I thought of running away from it, but no matter where I went, it’d just follow along with me.
Anyhow, I don’t know what happened, but once, probably in summer 2006, after I had gotten a tooth extraction, I noticed my hearing dissipating in my left ear if I moved my jaw too far back. I was genuinely afraid of this, and I never told anyone about it, so I don’t know what could’ve caused it. I suspect it might have been due to inflammation of the tempromandibular joints, but since I was on non-steroidal anti-inflammatory drugs, I didn’t feel anything.
Anyhow, socialising got harder and harder as my hearing continued to worsen over time. Crossing streets became troublesome to the point I needed to solicit assistance all the time, and I’ve had some blind people guilt trip me into thinking it was my fault I couldn’t hear them when they yelled at me or whatever, instead of just using alternative means of communication, like spelling words on demand using the phlnetic alphabet. One thing I’ve come to realise is that the more I am familiar with hearing a word or phrase based on its cadence, rhythm, inflection, intonation, prosody, etc, I could recognise it even if I didn’t hear all the vowels and consonants. Of course this wouldn’t work for words or phrases I’ve never heard before. It’s like listening to the lyrics of a song. Your brain expects to know what is coming ahead. This I later learned to be Lady Mondegreen Syndrome. That’s why one of my former teachers of the visually-impaired gave me a special nickname so that even if I didn’t recognise his voice, I’d still know who he was because of that.
When I got my first computer in 2007, even though I didn’t have internet then, I still had enough hearing to use the desktop speakers at high volume. I watched some TV shows by pressing my right ear against the TV’s speakers, but I later found a TV with a headphone jack, and this made watching TV shows easier. It wasn’t until late 2009 to early 2010 that my hearing decreased rapidly, especially in my right ear, that I started being more dependent on my assistive technology to hear my surroundings even when I was in my own home.
When I first got my own internet through Comcast back in 2010, I was gradually introduced to other blind people on Skype and other platforms, and I learned about audio production-editing using single and multi-track editors and digital audio workstations, MIDI sequencers and VST hosts. I did not know much about some of the fancier audio equipment people used to make better quality recordings, though. I had lots of ideas for making audio drama, but I ended up being criticised because people told me that my audio was of super-low quality. They never explained how so it was,and I probably should’ve explained how difficult things were with my hearing loss. Alas, I never did. Instead, I continued pressing on, oblivious to some of the artifacts I was likely producing by boosting my onboard sound card’s preamplifier to the maximum so I could monitor myself, and probably other things. Speaking of monitors, I began relying hevily on anything that acted as one to also behave like a personal sound amplifier or hearable. This is one of the ways I’ve developed interesting and unconventional uses of audio gear. I’ve used headphones as stereo microphones. I didn’t know that in-ear mics existed, like the Andrea’s Electronics binaural microphone headphone combo, or the earbud version. Fortunately, I later got a Pocket Talker Ultra from Williams Sound. I really enjoyed using them because to people, it didn’t look like I was using hearing aids. Rather, it looked more like I was listening to music or something. Someone told me that if I got Bose’s new augmented-reality headset or Apple Air Pods, I could virtually use hearing aids all the time. Not only have I found monitoring to be of great help in amplifying my surroundings, but it has helped restore my hearing awareness, so that I was more likely to notice when I mispronounced words or use wrong intonations as is common in people who can’t hear themselves well. Of course, people who wear hearing devices all the time, even when they sleep, are likely to develop a lot of earwax over time. Also, I spoke with somebody who said that they absolutely hated hearing aids and avoided them like the plague. They said that even if insurance were to pay three to five thousand dollars for a piece of crap, it was still a rip-off when they could easily build a rig that was about a thousand dollars and have much better EQ and filters and binaural microphones and stereo headphones.
In Fall of 2011, I was now at the top of the heap in my high school career. I initially didn’t think of making anything of it other than do my school work, but when I learned that our musical theatre department was putting on a production of The Wizard Of Oz, one of my favourites of all time, I knew I had to conquer my fear of not being able to do well because of my hearing challenges. And, while I didn’t run the soundboard that time, I did help in sound design by gathering sound effects from my archive and mixing them together, and even recording my own sound effect and editing it. I later got to run the board for Senior Spotlight after having demonstrated that I had exceptionally good operational skills even if I didn’t possess the technical background, knowledge or expertise of audio fundamentals.
Although a lot of people always recommended that I record lectures using a digital voice recorder, there was one particular reason I didn’t often follow through, a huge problem I didn’t learn about until much later. If you remember when I first talked about using an FM system, and if you read the article I linked here pertaining to that subject, then you are probably aware that many venues provide assistive listening devices to help negate the effects of ambient noise by bringing the sound of the person speaking into the microphone directly into someone’s ears. This is because, more often than not, sounds with frequencies that decay rapidly are lost in the reverberation or echo of a room, thus making it virtually impossible for one to hear the subtleties of a vowel or consonant. This was always a problem I experienced when I was at an auditorium and couldn’t hear what was being said through a speaker, or even when someone was just talking without one. What I’ve also noticed was that there tended to be some psychoacoustic differences in using headphones versus speakers. For instance, if I recorded something, and then I used speakers to play it back, I might hear things I failed to hear had I used headphones or earbuds. So, beginning in 2014, I began to look for ways of recording lectures directly. I had one instructor stand in front of a stereo microphone that was hooked up to my computer so I could record what they were saying. One challenge to using this kind of approach of direct listening was that since FM and other wireless transmission systems sent the microphone’s input directly into the hearing aid in mono, we also tend to lose any sense of directionality, so if a person were to my left, they would still sound as if they were in the centre. The only exception to this would be if someone invented a wireless system that used stereo microphones. So, when I ran the show for Senior Spotlight, I was able to use my FM rig to connect to the soundboard, and while I couldn’t hear the performers who were far away from the hanging mics, I was able to hear when one of them spoke directly into the microphone, and I knew when to play the sounds without the help of the stage manager to cue me by tapping on my shoulder.
Anyhow, in 2016, I was eligible to get new hearing aids thanks to my insurance plan. These new devices had two microphone capsules with variable pick-up patterns. They wanted to wait until I had completed another tympanogram, audiogram and speech perception test, all unaided, before configuring them. It was determined that I could not hear anything above 3,100Hz at 85Db in the right ear, and nothing above that frequency, no matter how loud it was, on the left ear. I once had a few bone conduction tests, but I told them that I mostly felt the vibration of the tones rather than heard them because of the occlusion effect. Speaking of that, some of the older hearing aids used a bar that you would bite on, so that the sounds resonating from it would be transferred via this means. Since the type of hearing aids I received were more modern, it meant that I could now use brand-specific accessories to enhance my listening experience. I now use a ComPilot Streamer, which is just like a neck loop, but uses a different RF protocol, which makes it unsharable to other hearing aid users. These hearing aids also had sophisticated digital signal processing for equallisation, cut and shelf filters, and even a transposition feature. Imagine I played a tone at B-flat 7. To my ears, it would sound like something in between B5 and B-sharp5. That feature always threw me off because I didn’t know what was real and what was not. I had the audiologist set up a programme that would turn this feature off whenever I wanted to listen to music. Anyhow, it made things like the S-sound sound more like an SH. It was still hard to differentiate between the Eeh and ooh vowels, though. For example, my friend told me that they knew of someone who may have had auditory neuropathy or central auditory processing disorder, and that they couldn’t hear the /k/ and /t/ sounds in cat, leaving them only to hear the /ae/ sound with a high attack and release. Although this post further explains how these hearing aids work, I couldn’t find one that talked about how lack of exposure to high frequencies could lead to brain atrophy, so some manufacturers are using either a harmonic exciter or some other technique to gradually introduce those high frequencies again. I hope that using these techniques, we can develop more hearing simulators that can simulate various hearing impairments the way some goggles are able to simulate blurred vision for things like what it feels like to be drunk. We could even prepare people to know how wearing a cochlear implant full-time might feel.
Having said that, I heard about a former on-line academy that prepared blind people for careers in the IT and audio production fields earlier this year. Sadly, however, they ran out of funding, but luckily, they released their audio courses. Alternatively, you can go here to learn more about IT, and here to find tutorials on audio engineering and production. When I finally started working on refining my critical listening abilities, I found that I could not hear certain vital characteristics that would’ve helped me determine if there were problems in my audio, such as aliasing, quantisation noise, artifacts from transcoding, comb filter effects, etc. At least now I knew about these concepts so that I would be more aware of them.
So, that’s basically my experiences with hearing loss in a nutshell. I do hope that synthetic biologists will further experiment with quale and other birds and reptiles to better understand how epidermal stem cells work, and work on implementing a technique discovered by Oregon State University. I know that a lot of blind people would act indifferent about wanting to restore their eyesight, but they would almost no doubt jump at the chance of having their hearing loss cured, assuming they lost it later in life. Of course, there is always going to be a big Deaf and a little deaf, the former referring to people who identify with Deaf culture and have lerned to embrace it. Someone from the National Federation of the Blind said that there was no such thing as Blind Culture. So, is there such a thing as Deaf-Blind culture? You tell me.

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.

In the Dark..a blessing or a curse?

Whenever I am talking about blind people, I am using that as a term not only to describe the obvious, but to include those who have multiple disabilities that have blindness as the primary disability intersectionally. Comments will be surrounded by asterisks within the blockquoted text.

Since I couldn’t travel to New York City in order to attend the protest against CW’s newest show In The Dark, I thought I’d use social media to highlight exactly why this show is disgusting and problematic, and why it should be boycotted. I don’t think a blind actress should replace a sighted actress at all in this instance; I think the entire show should be obliterated. Not only is yet another disabled character being played by someone without a disability, but the entire synopsis is degrading. I took the time to sit down with a friend while she described the 3 minute and 30 second trailer for this show, and these are the observations I made:

  1. The trailer for a show about a blind girl is not audio described… you think about it and tell me what the problem is, the irony.
    *Well, not only is it lacking in audio description, but deaf-blind people can’t access it because it doesn’t have captioning in Braille. We miss out on a lot of films and TV shows because of this.*
  2. The actress feels faces, which is just about the most irritating stereotype that exists surrounding the blind. In case you didn’t know, we don’t do that. It’s weird, and we possess a lot more social competency and awareness than you give us credit for. This stereotype is almost as infuriating as the belief that we are all depressed, helpless losers with no lives. Oh wait… CW has that covered too…
    *Actually, some, not all, blind people do this. I know some deaf-blind people who feel other people’s faces, and some blind people in other countries might do this as well.*
  3. In the Dark portrays the blind girl as a depressed, helpless loser with no life. She just sits around all day, complains, wallows in self-pity, yells at her guide dog, eats a ton of unhealthy food, drinks a lot, and smokes cigarettes. Clearly, she is blind, and can’t aspire to anything else. Blindness symbolizes the end to all happiness and success, right CW? Thank you for further reinforcing the burden mentality, the idea that only a freak occurrence can save us from ourselves. God forbid we’re content, responsible, self-sufficient, and educated.
    *It is true that blindness is the number one most feared disability compared to other disabilities, but no disability is better than the other. Anybody can have a depressing life that is not related to blindness at all and not have any willingness to succeed, so blind people certainly have nothing to do with it. Yes, it’s harder when you have a lot of challenges, such as having a secondary disability or mental health issues, but at least we’re trying to overcome them. Tell me if the common person is able to differentiate between flawed personalities versus blindness characteristics.*
  4. The actress flails a cane around like a child with a baseball bat, or any new toy, because, let’s be real, to her, it is only a cool toy. This is not representative of a mobility tool, nor proper technique. It’s embarrassing. We do not navigate by wildly thrashing our canes around until we find something. Orientation and mobility skills take years to learn. This little show the actress puts on is disgraceful. This also applies to how she works her guide dog. She does not work him properly because, well, SHE IS NOT BLIND!
    *This is why we need genuine performers with the minority or characteristics that deviates from the social norm being represented. If you want to portray an African American, don’t hire a white person who dyes their skin black. Similarly, don’t hire a woman dressed as a man to portray a transgender man! So yes, working with blind people can help tone down the techniques so that it doesn’t seem so overly exaggerated. But truth is, people say that professional blind performers need so many accommodations it becomes a burden… that’s a load of bull! Still, people would say the show was too boring if it didn’t have all these exaggerations.*
  5. In the first few seconds of the trailer, she immediately knocks something over. While we do find ourselves in a fair share of accidents, spills, and so forth, we are not clumsy idiots. We make human errors just like anyone else. It’s disturbing that the first thing CW wants its audience to watch in the trailer is a blind person making a mess.
    *Everybody makes mistakes, and anybody can be a total cluts. Taking away senses doesn’t reduce cognition or heighten other senses, in most cases, but remember that she was supposed to be drunk in the first place. So, blind people who drank would most certainly knock things over.*
  6. The blind girl is incredibly rude, and purposely uses her blindness to push her way to the front of a line. Watch out everyone, I’m ruthless. I’m blind, so I’m not capable of waiting my turn. Blind people are an impatient species with no compassion. Give me a break!
    *Many blind people have entitlement issues, and in fact, many people in other minorities have this problem. Impatience and lack of tolerance is partly to blame. Yes, we don’t want to act like we’re better than you, we just want equal rights as you. We can do this by educating, not demanding.*
  7. The desperate blind sweep with her arms? Really? We don’t have to feel our way around our own houses. We are intelligent enough to know where everything is. Then again, she is drunk all the time, so maybe I should cut the girl some slack.
    *Why repeat yourself? This is a lot like the point where blind people knock things over. We have good proprioception, and if sighted people could just stop being so light-dependent for a few days, they, too, can develop body coordination. It’s not a superhuman ability to know when we’re home just by feeling the turns of a vehicle, although I am a transhumanist and advocate for enhanced sensory augmentation. We set things up so we know where they are, and we think about what we are going to do before we do them. Sighted people just look and do without thinking. This is why I do not like it when they move things around without me knowing, or leave doors open where I can get a prapfall.*
  8. Wow! We go from being incapable of having sex in the public opinion, to being utterly promiscuous, because it’s impossible for us to enjoy the same things as our nondisabled peers, we have to fall under one extreme or the other. CW has managed to fetishize blind women to do us the honor of overcompensating for low expectations. Yes, we like sex. No, we will not sleep with everything that moves like this girl. We have standards, too.
    *This is very flawed, especially since society sees people with disabilities as being entirely sexless, and yes, that may be true to some extent, but that is not always the case. In fact, there is a lot of concern that blind women are at greater risk for sexual assault. And, it is common for them to date and have sex with other blind people.*
  9. The blind girl only has 2 friends. But wait… plot twist: one of them dies. I can promise you that most of us have more than 2 friends, because we are fully functional members of society who can socialize. Add a zero or two to that number of friends and CW may be slightly more accurate.
    *Having many disabilities, or having things that do not pertain to a disability, can make it hard for people to socialise, so we are not all airheads and bimbos, or social butterflies.*
  10. The blind girl makes eye contact with everyone. Now, while we are able to look in the direction of the person talking to us, we cannot make full eye contact, based on the fact that we are, you know, blind. Eye contact is something that we physically cannot give.
    *Of course blind people can, and should, give eye contact whenever you can. For people whos hearing is dominant in one ear, they end up turning in that direction, which makes eye contact virtually impossible.*
  11. The blind girl has a stereotypical job; she helps out at a guide dog school. This is probably because blind people can only pursue careers in blindness-related fields. They are unable and unwilling to work in mainstream positions, or be integrated into communities at large. We enjoy subminimum wages, sheltered workshops, and blindness-related fields. Couldn’t she at least work as a masseuse?
    *This is true of any minority group, and blind people are certainly no exception. Vocational rehabilitation agencies probably deflected any dreams of blind aspiring performers that they would never succeed. Besides, blind people can become entrepreneurs, and there should be no shame in it as long as it is an honest job.*

All in all, the creators of In the Dark condone, and praise, ableism at its finest.

They degrade the disabled community by casting a sighted actress who can’t use a cane, but gives consistent eye contact. She enforces pre-existing stereotypes, and couldn’t care less as long as she gets a pay cheque. This is a pathetic excuse for a disabled main character. Blind people are not depressed, we have way more than two friends, and, shocker, we don’t cut lines and cheat.
*This is why there is this thing called insporational porn. It’s not a surprise that 70% of the nation’s blindness population is unemployed compared to about 5%, which is just really too bad because blind people have talents that go beyond using things technology-related, and I mean technology as in computers, not medicine, which is another existing stereotype. Sighted people often use wheelchairs to cut lines at airports, and some also try to pass their pets as service animals. So, you’ve got a problem with people taking advantage of our disabilities to get your way? If you want a really exciting show, get yourself a cast of real blind people who do not feel degraded to be in such a flawed premise to work together in solveing a mystery or something, but seriously….who’d want to watch a boring show if the sighted actress were perfect in every way. Yes, some blind people have done some of these things that were contradicted. Sheltered, ruthless, friendless, promiscuous, sexless, face-feeling, depressed and drugged couch potatoes with no life. But it doesn’t have to be like that, and in fact, most of us aren’t. We have more important things to worry about here than quibble about things we haven’t yet watched in its entirety and are fussing over without cause.
So, bottom line is, stop being such a baby and go watch the show. Then you won’t come off sounding like an idiot.*

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