Category Archives: Disability

On Healing

Posted on by John

A series of recent events have me thinking about how I feel about life with dual disabilities. Specifically, to what degree would I want to mitigate or perhaps eliminate at least the medical component of said disabilities, should that become more possible in the future.

I suppose because I wasn’t born with significant hearing loss, but have had to adjust to it over the lifespan, I would definitely opt into something that promised to correct my hearing. I’m pretty sure now though that I’ve had some loss in that area even before I had become aware of it.

Certainly the technology to enable one to hear, at least in an electronic way, has progressed in leaps and bounds in recent years. Many see this in the existence of the Cochlear Implant. One thing that gives me pause in goingfor a CI though is that I’ve heard it can throw off sound localization, making it difficult for someone who is also blind to navigate safely around his or her environment. I think one could adjust to this, but I know not how long that might take.

I recently met an individual who is a mental health advocate, writer, and one who has assisted many people with disabilities in learning the social landscape. This person shared with me a video in which a woman hears sound for the first time via a cochlear implant.

I’d heard of this video before, and its attendant controversy. I guess people’s biggest concern had to do with the notion, right or wrong, that it would serve to enhance the public’s idea that perceived disability must always be a bad thing and should thus be dealt with. Some were also not sure how to take having such a private, emotionally jarring moment aired online. My position on that is it was her personal decision to do this, and should be seen as such.

I could be wrong, but it seems to me that deafness doesn’t get quite the social taboo that blindness does. I mean I suppose most wouldn’t actively choose to be without hearing, but many individuals who are deaf only can get good jobs and do things where their competence is questioned a little less. Are they discriminated against in some ways? I’m sure of it, and especially when attempting to communicate with others who are not deaf and don’t know sign language, or take in programming that isn’t properly captioned.

But when many see an individual who is blind, they automatically assume that some sort of sin has stained their soul. Some of the braver folks figure that God has actually appointed them to lift that sin, as a person tried to do this morning.

I’m strolling along, enjoying the birdsong and wind that finish waking me up as I head toward the bus stop. I get to the street corner, and over the sound of a roaring machine of some sort, maybe a lawn mower? I don’t know, I hear someone calling, maybe my name?

Are you talking to me?” I ask, turning to face the voice.

“Yes,” she replies. “God says he wants me to touch your eyes.”

And before I can stop her, she has practically smacked me in the face! She pounds my eyes a couple of good times before I softly remove her hands and push them down.

“Um,” I say: “I’m just trying to cross the street, an now I’m distracted. Can you tell me when to go?”

“Yes, but you gotta feel what happened! You have to believe! God’s gonna open your eyes in a week!”

I just say ok, and thank you, and shuffle on down towards the stop.

Because I’ve never seen before, I can’t even begin to imagine what it would be like to suddenly have working eyes in a week. I guess it would be like that woman’s reaction times 100, as I’d be bombarded with stimuli that I couldn’t make sense of without the proper context and training. I wonder if people who hope for such things to happen to a totally blind stranger have even stopped to consider the ramifications of the situation?

Second, I think I’m made just the way I’m supposed to be. As with hearing, I don’t begrudge anyone who wishes to be able to see after having been totally blind whenever it becomes feasible to do so, but I definitely don’t. I guess in many respects, I would feel like I’m giving up my “self” as I currently know it.

These are certainly interesting and complicated issues, and I know many who are working to find their own answers as they deal with one, both, or some varying combination of them. I guess what it comes down to in the end, as I said when someone at a small church I went to thought of trying this same sort of intervention, is to respect the person’s humanity. Ask them questions about what they might want you to pray over, or if they’d just prefer to be left alone. Because what you think you see in someone else is not always what is.

#BADD2014: Housing For All

Posted on by John

For I think I saw, the 9th straight year, this May 1st was Blog Against Disablism Day. Hash tagged #BADD2014 on Twitter, it asked individuals to talk about an area where people with disabilities still experience significant challenges in image, access, or perception. I wrote a post for this last year entitled The Rarity of Multi, in which I discussed some of the unique things with which a deafblind individual, or really anyone with multiple disabilities, must deal. I’m late to the punch with this, but figured that the message was more important than timing.

As I write, I’m viewing a Twitter stream about individuals who are in Washington DC, participating in a rally by an organization called Adapt that is designed to highlight continued access needs for persons with disabilities in housing. I suppose these are most applicable to persons in wheelchairs, in that ramps, low thresholds, and the like should be available to anyone who needs them. But as they point out, creating housing that meets these standards would have the effect of making it easier for others to get in and out as well.

I can tell you from my experience that fully accessible housing is still very much a thing to be worked towards. In my area of the complex, for example, I can’t think of a way for someone using a wheelchair to easily get into my apartment. Well I guess there are two potential ways: either squeezing onto the porch from the right side, which would involve some scary ruts in which one might get stuck, or coming down a fairly slanted hill onto the area between C and D. I suppose the latter way would be best, but would I’m sure involve its own dangers.

And if they get to my door, they would have to somehow hoist themselves up over the high step in order to get inside. Again, I don’t know a whole lot about how wheelchairs work, but I assume this is possible to do? Someone can inform me.

As this grassroots movement points out, another big part of access is affordability. There is definitely a lack of affordable housing that is also in decent enough shape for a person to really feel comfortable therein. I guess that I am fortunate, in that all I really need to get by is four walls that generally hold up and a door I can lock. However, even these haven’t always been promised me in my current residence, as one day the front door’s lock inexplicably broke and my neighbor and I had to double team the maintenance people in order for them to comprehend the seriousness of the problem and come over.

Given that so many of us with disabilities are un or underemployed, having the ability to keep that price down is tantamount to maintaining independence. I’ve talked with some who tell me that they have been unable to find anything less than $800 that also met their access needs, when really they need a place in the $5-600 price range. Some of these individuals have health issues that mean they can’t really be in situations that might disturb them, such as locations with loud music or rowdy neighbors. Others are blind or otherwise unable to power vehicles, and thus need to live along a bus line and as close to groceries, recreational areas and the like as possible. And yes, one might argue that these folks can use paratransit, a specialized door-to-door service for persons with disabilities, but even this requires that you be within 3/4 of a mile of a bus line in order to gain regular access. Slow change is happening, but currently housing in these areas, and especially affordable housing, is too often sketchy.

I am mainly hoping to contribute something to the thought process around this complicated issue, and the varied solutions that will have to be implemented in order to address it. I’m sure that there are many voices who can point these things out more eloquently than I can, but figure that by granting it some exposure here, perhaps I’ll get others to check those other voices out as well. For we all certainly have the right to live in communities that help us grow and use our potential to its fullest.

Hear It: My Challenging Wax-cleaning

Posted on by John

I should open by saying that I am trying as best I can not to come across as overly critical of anyone. I do not think for a minute that the medical professional who saw me intended for my experience to be as it was, and there are things I could have done to make it less likely to have gone that way as well.

That said, I have a disorder called Norrie Disease that renders some unable to communicate what they are feeling or thinking, due to moderate to severe intellectual disability, autism, or some other developmental challenge. So, I take seriously the idea that I can attempt to be a voice for others, of course not having gone through exactly what they are but still being able to give some idea as to what it may be like.

So an audiologist with whom I worked looked at my ears on my last visit to have the aids cleaned. This happened right before the phrenetic events of my Christmas vacation, and in many respects if the aids had to die on me again, I am highly fortunate that they didn’t wait past December 20th to do so. I can’t imagine the displeasure of trying to get by with only one working ear in large family gatherings. Even with both working, functioning in such gatherings takes work.

Anyway, she determined that my right ear in particular was packed to the gills with wax and should be dealt with immediately. She’d wanted to schedule an appointment for that day, but not surprisingly this wasn’t available. So, she had me booked to go in today.

For this appointment, I had to go to UNC Hospital, which is practically on the UNC campus. I managed to get to the Audiology department in time for my 9:45 appointment and settled in the lobby where they were watching some sort of weird cartoon. I also heard kids scampering around, probably burning off energy as their parents tried in vain to keep up.

Soon, I went in to see the nurses and have my initial forms filled out. They weighed me, I’m up to 141 pounds which may be the highest number this skinny person has ever recorded. Then, they started asking me all sorts of scary questions about disease, family history, etc. Standard stuff I know, but nevertheless it makes me nervous.

After a short wait in a doctor’s office, thankfully not too cold, and just as I pulled out the iPhone figuring that it might take longer for him to arrive, the doctor showed up.

“Ok, what are we doing here today?” he asked.

“I’m here to have my wax cleaned out,” I replied. “My audiologist says it’s starting to be a real problem.”

“Ok then, hop on up here,” (I was ushered to a somewhat reclined chair where my head was then placed firmly against its back at an angle), “and take out the aids, one at a time so you can still hear me and will know what to expect.”

Into my right ear went the air machine. I actually don’t really know what it is called, except that it made a fair bit of noise. I could immediately feel it sucking, and thought to myself “ok, maybe this won’t be so bad after all.”

And then, oh but then. He gradually amped up, commenting: “man this stuff is really packed in. That’s common for hearing aid wearers though.”

If I had remembered my last attempt at having this done, I would have suggested that we go ahead and stop there, just letting him prescribe me the eardrops he eventually did recommend I get. You administer them to each ear approximately three times a week for a month, and they’re supposed to loosen up the wax so that it will come out more easily. I’d done this a year or so ago, but then we never went forward with the larger-scale wax removal.

Unfortunately for me, this thought didn’t occur to me. As the machine pulled harder and harder in my ear, first tears began rolling down my eyes.

“Are you ok?” he asked.

“Yeah, this sort of thing just makes my eyes water,” I replied. I’m not crying! I thought to myself.

Within the next few seconds, I practically was crying. I kicked the table, screamed “ouch!” and all but forced him to stop. Oo man! I don’t think I’ve ever experienced pain like that. Oddly, the only thing I could think was “I wonder how on earth women go through with childbirth?”

“I’m about to pass out!” I instructed him once the machine had ceased operating and I’d removed both aids. “Would you happen to have any water available?”

I guess it had occurred to him that I might just need some water at some point, because a full styrofoam cup was in my hand a second later. I gulped it greedily, and just managed to stave off that unwanted episode.

After this, he decided to go ahead with the drops after all and have me return on February 13th for an attempt to complete the process. I was more than a little relieved to get out of there with my hearing in tact.

Except, when I plugged my right-side aid back in, all I heard was the faintest sound of its turn-on tone. “Oh no,” I thought in panic: “I may have lost a lot of my hearing in this ear!”

I muddled my way back on to a bus to Franklin Street to go to Walgreens and collect the prescription, then fired off an email to one of my audiologists to ask what she thought might be happening. I said “and if this loss is permanent, can I begin the process of getting a cochlear implant?”

She replied, correctly I now believe, that things would probably be ok in short order. My canals are kind of small, and thus it’s easy to get things like wax and such lodged in a place and way that it shouldn’t be. As the day has progressed, I’ve noticed more hearing returning as the pain lessens. All I can say to that is Thank God! I envisioned having to make radical changes to my navigation and independence, which I would have done if necessary. But I won’t lie, that sort of adjustment would be hard. I’ll probably have to make it at some point, I imagine.

So I guess the main reason I’m writing about this is to note the importance of really sitting down with the patient, doctor, and perhaps someone who can communicate on the patient’s behalf before treatment is initiated and generating a plan. The thing is, I know that doctors rarely have time to do this. If it doesn’t happen though, it could definitely have less-than-desirable consequences.

Also, it is important to listen to and be aware of the patient’s responses. I can say that he did suspend treatment once it became clear that I could no longer stand it. I’ve heard of cases where this hasn’t happened, and I’d bet it would be more likely if the patient was unable to speak for him or herself.

Just some stuff to think about. I hope all will be normal for me by the weekend, as I still feel some lingering pain but it is now more noticeably decreasing. A nap when I arrived home helped with this. I hope I don’t have any balance issues when returning to work tomorrow, but we shall see. More soon.

My Tech Experience, 1987-1997

Posted on by John

I had written an entry like this in my previous blog, but it got sucked down the drain in the great Spam attack of mid-February. Ugh. So, I shall try again. Also, this’ll be more comprehensive. There’s a pretty good chance I’ll make at least two and perhaps three entries out of this, so as not to go entirely too long. Plus, it’ll give me some days and topics in this challenge.
Now, this topic is going to be more of interest to the sighted people who may know little or nothing about the kinds of soft and hardware that blind folks are able to use. I’m writing it specifically because someone I came across in the #31WriteNow challenge asked questions about this, and hey what am I if not a divulger of information? So, why don’t we start from what I think is the beginning.
My first interactions with technology came about in approximately my third grade year. This means 1987-88.
I’m not savvy enough to know which kind of computer we were using, other than that it was one of those big, clunky Apple machines with attached monitor and on which you had to flip a switch on the back of the unit to power up.
Remember those loud six-inch floppy disk hard drives? One had to insert a disk in order for the system to work, and if you popped it out prematurely it sounded as if an electric shock was being delivered! Even though that sound terrified me I couldn’t get enough of it, having to be admonished repeatedly by my teachers to “cut that out!”
Attached to our unit was a specialized external synthesizer that we could adjust and turn off and on independently of the computer itself. I believe at first, the synthetic speech may have been generated by whichever program ran on the disks we used, but I’m not entirely sure about that. Anyway, by today’s standards the voice was rather annoying. I wonder how I even understood it.
We primarily used the computer at this time for gameplay. My favorites were Space Invaders, one that asked you to listen to an ascending tone and whack the space bar whenever the tone matched where you were on the screen, supposingly causing you to hit the invading alien ships. This tone would get faster and faster until eventually you misfired. I could spend hours with that one.
Another favorite was the Math Olympics, a fun, multiplayer game that had a series of problems to solve in order to take home the medal. Each player selected a country to play under, and the winner would have its national anthem played. Ah, the sneaky ways to educate children without them even being aware of it.
Most of my typing skills were actually acquired on a typewriter, though. We had a big, electrical thing, and I loved feeling like an officeworker as I struck the keys rapidly, enjoying that sound and making no doubt countless errors. In 1992, I used that thing to nervously hammer out a Valentine’s note to one of my first crushes.
By about that year, technology took a considerable leap forward for blind individuals. I think it had existed in some form prior to that period, but that was the first year my school system got access to what were called Braille ‘n Speak machines made by the company that would eventually become Freedom Scientific but was then known as Blazie Engineering. These things were amazing to us, because for the first time we had a really portable device on which we could write Braille quickly and efficiently. They also had somewhat boring synthetic speech voices by comparison to today’s technology, but my cousin, a number of friends and I never tired of playing with the speech rate and pitch and doing such silly things as making it read a long string of A’s, variably punctuated sentences, and any other thing that would make the voice react oddly.
I have a synthesizer on my machine called eSpeak as part of another software application that I will profile in a later entry. While not exact, the uninflected eSpeak voice nearly approaches that of the Braille ‘n Speak. Listen to a short sample.
From my technological point of view, not much really changed up through 1997. They did eventually create a better version of the Braille ‘n Speak, called a Braille Lite, that had a refreshable Braille display. This is a device that uses little pens to simulate the dots one would feel on a Braille page. Some, like the Braille Lite’s, are built entirely into the machine, although it is more common for the units to be detachable these days. They are fantastic pieces of equipment, however the price of these is prohibitive for most would-be users.
This had sadly been the case for most all blindness-specific technology, but fortunately those old barriers are being bulldozed. In subsequent entries, I will detail how some of this has occurred. From 1997-2007, the rise and proliferation of the personal computer, still dominated by two or three screen-reading products. From 2007-present, the introduction of cheaper, effective screen-readers, and the rapid accessibility gains made with smartphones.