Monthly Archives: October 2015

Why Green Peppers are evil: Doctors, Drama and Disability

28 Wednesday Oct 2015

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Several years ago, I decided to donate blood.  A friend had done this several times, and had said she would go with me and donate blood at the same time I did.  At the best of times, I’ll acknowledge that I’m not comfortable with needles (even a flu shot creeps me out), but I thought that donating blood was such a worthy cause, and my friend would be with me… so we filled out the paperwork, and got prepared for the donation.  I distinctly remember sitting in the chair and the needle going in to the crook of my arm… and a boiling hot sensation traveling the whole length of my arm from elbow to wrist.  I yelled for them to remove the needle – I think the words were “Get it out!” – and several workers told me that it was OK, it would only hurt for a second.  Some of the longest five seconds of my life passed before me, arm still feeling like someone had scalded the inside with hot water, still screaming for the needle to be removed, before my wish was granted.  I was shaking and crying, and the next ten minutes, over the post-donation juice and cookies, several well-meaning workers came by and told me that it was OK, that lots of people couldn’t handle needles.  Humiliated, my friend and I left the blood donation clinic, and I’ve never been able to muster the courage to try again – not because of fear, but because my cries of pain were treated as a simple discomfort with the needle.

 

Would this perception have been the same had I been sighted?  I can’t say for sure.  But over the years I have found myself in situations where medical professionals either “get it” and treat me like an adult… or they don’t.  Many people I know have more experience than I in this regard, and I am more than willing to be called out as a medical-professional novice.  Thankfully, the majority of my experiences with the medical profession have been positive.  The one glaring exception was an orthodontist I saw when I was in my mid-teens, who constantly spoke to my mother and not to me during the entire 1.5 hour preliminary consultation.  Even though my teeth were the ones to be worked on, and I was the one answering questions, in his eyes I was a child – a blind child at that – and thus not worthy of the courtesy of being addressed directly.  The whole experience soured me on orthodontists for several years, until I knew I could not wait much longer.  Fortunately, my dentist referred me to a terrific orthodontist who allowed 22-year-old me to be responsible for the care I received.  He offered his opinions, I accepted some, chose alternatives for others, but I had the facts in hand and made informed choices about my own dental care.  Maybe it’s because I came to my appointments alone for the first few months, but I was viewed as an autonomous adult, with preferences as to how I wanted my orthodontic treatment to go.  It didn’t all go as planned, but I felt like I was a member of my own orthodontic team.

 

Over the years, I have accompanied friends, family, or my husband to medical appointments or emergency rooms, and have witnessed first-hand how the blind can be treated differently from the sighted.  It can sometimes be demoralizing and frustrating – having doctors or nurses speak to one’s spouse/friend/parent and not to the one person whose body is being examined – and any time I need to go to a new medical professional, a little piece of me worries in the back of my mind about whether I will be spoken to, about, or over by front-line staff or – worse – by the doctor/dentist/physiotherapist themselves.  So this afternoon, when I sliced my finger while cutting a green pepper, not only did I worry about the possibility of stitches (FYI, I get the creeps just writing this) but whether at the hospital I would be treated like a child or the adult that I am.

 

I was cooking chicken alfredo.  The pasta was cooking, I’d sliced broccoli and mushrooms, and was about halfway through slicing the green pepper when the knife slipped and cut my left index finger.  It started bleeding like crazy, but didn’t hurt much yet.  I ran it under cold water and waited to feel… something.  My husband grabbed Jenny’s emergency kit, used half a roll of gauze, wrapped my finger and bandaged it.  We were out the door so fast that we left Jenny at home alone without dinner.

 

At the hospital, we were directed to the triage area.  The greeter at the front door directed most of her comments over the next little while to my husband, and I had a little bit of a sinking feeling in my stomach, like I was invisible, even though I was the one who was injured.  Thankfully, from the nurse who took my blood pressure and temperature (and removed Ben’s bandage masterpiece), to the one who took my personal information, to the doctor who gave me a band-aid and sent me home, I was addressed directly for all medical and personal information.  Sadly, this is not always the case.  Sometimes the person who accompanies a blind person to an appointment for moral support is addressed as though they are our carers; sometimes our choices or preferences regarding our own health care are swept under the rug because we are simply not medical professionals.  And sometimes, like today, a blind woman with a bandaged finger is treated like a woman with a bandaged finger; it’s sad to say that such treatment tends to be so rare that I have a new spring in my step this evening.

 

And just in case anyone was wondering, Jenny did get her supper… and green peppers are evil!

Fixing what Isn’t Broken: Simming, Surgery, and Psychology

18 Sunday Oct 2015

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“Hi! My name’s John.”
“Hi, John.”
“I couldn’t help noticing that you’re blind.”
“Yes, that’s true.”
“I read this awesome article in a scientific magazine about the research they are conducting on curing blindness.”
“Wow! That’s interesting.”
“Wouldn’t it be awesome? You could see everything around you! It would make your life SO much easier!”

Every single blind person I know has had this conversation – or some variant – at some point in their lives. The idea is that blindness is this horrid place of darkness, and a cure would fix all of our problems. But when someone such as myself has the nerve to say “A cure would be awesome for some people, but I don’t think I’d want it,” you’d think we’d just slaughtered a kitten on a downtown sidewalk – the flabbergasted reaction is so intense. But why WOULDN’t we want to see? Wouldn’t it be so amazing? My friend Meagan has eloquently written about her own reasons why a cure for blindness might not be for her; it’s an opinion that I share, so I won’t belabor the point.  But I have recently come across a couple of articles that have piqued my interest, not so much based on their content, but the public’s reaction to them.

Jewel Shuping. Her name has become quite well-known in the blindness community over the past few weeks, as she alleges that she suffers from a rare condition called Body Integrity Identity Disorder (BIID), in which someone whose body is perfectly healthy has an uncontrollable need to become disabled.  Jewel claims that, with the aid of a psychologist, she blinded herself with drain cleaner, and, prior to that, she “blind-simmed” (acted like she was blind), using a white cane and becoming proficient in braille.  Though Snopes finds her story hard to swallow, it does present an interesting case study, both of Jewel herself and of a general public who thinks the reverse – a cure for blindness – would be the greatest thing on earth.

You don’t have to dig too far into comment sections (that vast, murky landscape of anonymous internet users everywhere) to know that support for Jewel Schuping and the psychologist who assisted her is very rare indeed, from both sighted and blind alike.  Sighted people can’t imagine anyone who would willingly take such a risk (though Jewel Shuping is not the first or only blindsimmer out there); many in the blind community resent her for knowingly blinding herself and potentially using resources that are required by those who are blind due to genetics, illness or accident.  Leaving aside the method of drain cleaner to blind herself – as voluntarily removing eyes probably doesn’t fall under the purview of any medical facility in the world – the reaction to Jewel’s voluntary blindness can be described as perplexed at best and vitriolic at worst.

On the other hand, Mike May chose to undergo a surgery that would restore some of his vision after becoming blind as a three-year-old.  This article pops the fantasy bubble that receiving sight is simple and will make everything better; Robert Kurson’s book, “Crashing Through,” appears to further address May’s physical and mental transformation after receiving some of his sight.  While I have yet to read this book myself, and while May’s experience preceded the explosion of social media, judging by the number of blindness-related  organizations who share his story, May has maintained a wide acceptance from the blind community at large.

I dare not compare Jewel Shuping’s methodology with Mike May’s (one has the acceptance of the medical profession while the other clearly does not), but the idea that one purposeful life-changing act can be so derided while another can be so accepted baffles my mind.  Conversely, what about the individuals who are struggling to come to terms with their own blindness?  At some point, everyone has to face denial, anger, and hopefully will reach a healthy place of acceptance.  But I know people who have denied their vision impairment for so long, until they came to a place where they felt safe to acknowledge it openly.  Conversely, I have known people who have admitted to me that they have feigned less vision than they actually had.  Some blind people – particularly those who have had vision – dream of a cure one day; others wouldn’t know what to do with it if they had it. To muddy the waters even further, if a true cure for all forms of blindness were found, what happens if one chooses not to undergo what would likely be a complex surgery and a lengthy rehabilitation process?  Would we be denied housing, education, employment because of choosing not to undergo risky and complex medical procedures?

Leaving aside any hypotheticals, doesn’t living life well all come down to being secure in who we are?  For some, like Mike May, it might mean taking chances and undergoing a revolutionary medical procedure; for others it might mean embracing life without sight because it’s all we’ve got.  I don’t know where The Jewel Shupings of the world fit in; while a cure for blindness seems a long way off due to its complexity, willingly blinding yourself seems short-sighted (no pun intended) and complex as well.

So perhaps the next time “John” approaches me and tells me that a cure for my blindness (which, by the way, is more than one eye condition) will solve all my problems, I’ll ask him how he would feel if I told him that blinding himself would fix all of his insecurities, frustrations or grievances of life.  After all, he’s telling me the reverse is true.

I am Woman, I am strong, I am Deaf-blind

10 Saturday Oct 2015

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Have you ever wondered what it is like to be deaf-blind?  It’s been something I have been curious about since attending a summer camp with someone who is.  Since my post on deafness, deaf culture, and deaf-blindness only scratched the surface, I thought I would ask some of the deaf-blind people I know about what a day in their life is like.  Three wonderful women responded to my call-out for input.  They are students or professionals, single or married, with or without children.  In some ways, their life experiences overlap, and in others they diverge.  But they are all deaf-blind, and they live happy, healthy lives with hobbies, personal preferences, good and bad days.  they have learned – and in some cases are still learning – what they need in order to advocate for themselves, and have been able to communicate clearly.  In short, they are just like you and me. Thanks, Danielle, Tracy, and Rox’e, for being so open with your daily life, your hopes and your struggles.

Danielle

My name is Danielle and I am currently a Junior at Morehead State University in Kentucky, majoring in Elementary and Special Education.  I enjoy reading, swimming, running, and rock climbing.  I also happen to be deaf-blind.  I have no vision with mild to moderate hearing loss, and wear two hearing aids.   My day to day routine is for the most part a typical routine of classes, homework, hanging out with friends, etc.  However, there are aspects of my day that are unique to me as a deaf-blind person.

I use a guide dog as my primary travel aid.  My guide is a Special Needs guide dog who has been trained to accommodate vision and hearing loss.  She does not do specific hearing related tasks such as alerting to sounds, but she does have a lot of initiative in her guide work, which is essential since I cannot always rely on the sounds around me for orientation.  I get more information from what I can feel underneath my feet along with the ability to hold a mental map of familiar areas in my head as I travel.  I do use sounds to orient myself on the days that my hearing is fairly decent but since my hearing tends to change from day to day, how much I use it really depends on the day, time, and how tired I am.

Most people who meet me will be unable to tell that I am deaf-blind.  However, when there is a great deal of background noise such as in a cafeteria, loud classroom, and social gatherings, I usually cannot hear anything unless someone is speaking right beside me.  This also means I struggle to travel independently in these situations and often prefer to go sighted guide with a friend or family member and let my dog heel beside me.   In classes it can often be difficult, if not impossible, to hear classmates asking questions or answering them in the back of the room.  This sometimes can become very frustrating.  Luckily, I am becoming more and more comfortable with speaking up and letting people know when I can’t hear what is going on.   As a college student, I am often required to work in groups in order to complete assignments.  Many of these times it is done in class with multiple groups working at the same time.  This creates a lot of background noise, making it difficult for me to hear my own group and actively communicate and participate in the activity at hand.  As I participate in more and more group activities, I am gradually becoming more and more comfortable with being very clear with my group when I am struggling to hear them.  I find this to be very challenging at times.  Speaking up regarding my blindness has never been an issue but when it comes to speaking up when I can’t hear, I sometimes find it very stressful.   Fortunately, I have had some wonderful teachers who have recognized and understood the challenges I face in this type  of situation and instead of telling me that I did not have to do this, as is not uncommon, they continually insisted that I work in groups.  because of this, I can mostly function and participate in groups without being totally stressed.  I still get frustrated and a little stressed in these situations but I am able to work through it.  I still don’t enjoy being in places and situations where it is hard to hear but the more I’m put in these situations, the more comfortable I am.

Tracy

Tracy is a Canadian, but has lived in Oklahoma for the past several years. She blogs at http://www.deafblindconfessions.com

The bedside table’s light begins flashing and I roll over to turn the alarm off. It’s time to wake hubby and kids up for work and school. In the kitchen I pour juice into a cup until my finger over the rim gets wet and I stop pouring. Everything has a place for easier locating. But if it’s not, I’ll have to slowly look and feel other possible places it could be as “glancing around” doesn’t work for me.

After everyone’s left I go get ready for a morning outing. I apply my makeup by touch, being sure to smooth it all out (sometimes I think I’m just rubbing it all off instead). I lean in really close to the mirror to apply lip gloss. I then gather my purse and hat and wait for my ride. I usually use a white cane when I’m out, but when I have an SSP I rely on her instead.
My SSP arrives, she’s a Support Service Provider (or Intervenor in Canada). Her job is to be my eyes and ears, guiding me around & signing what’s happening in my environment, such as “there’s several people sitting in the waiting area on the left and the secretary’s window is on the right”. They do not make decisions for me or are “helpers/caretakers” as some assume.

At the store I tell my SSP what’s on my list. I hold onto the cart’s handlebar as she guides the cart from the side. She stops at the first item & describes the availability & prices. At the checkout she tells me the total as the register’s screen is too far away or turned around.
After returning home I put the groceries away and start prepping lunch. I have two cutting boards, one black and one white, this is for contrast. I cut light colored food on the dark board and vice versa. I have a brightly lit kitchen for best viewing and a range hood light over the stove, but sometimes I need to adjust my angle. Such as trying to see if the water’s boiling by looking sideways at the water surface. I “tactile” a lot, which is feeling around and “seeing” with my fingers. When cleaning the counters I wash it with a cloth then feel around the surface for any missed spots (bumps or stickiness). Getting around my home is easy as I’ve memorized the layout and its second nature now, but in the long hallways I use “trailing” which is using fingers or the back of my hand to trail the wall slightly ahead of me at waist level. This keeps me steady and straight and finds doorways.

For phone calls, if it’s to someone familiar like my husband or friends, I use a CapTel phone which captions the other party’s conversation through an operator and I read it on the screen. For other calls I use Internet Relay which goes through a Relay operator and she speaks what I type to the other party and then she types what they say to me. If I receive a phone call, or for other noise alerts (doorbell, smoke alarm, they are connected to a lamp that flashes the alerts. If I am away from the lamp or cannot see it, I also wear a pager that vibrates to alert me to the noise.

The kids get home from school. When they were younger, we used to sit at the kitchen table while they did their homework, and they’d ask questions if they got stuck. Now that they are older, I do what many parents do – “Got homework? Nope? Good! Don’t let me find out otherwise!”

Rox’e

Most people are awakened in the mornings – at least on weekdays – by the sound of their alarm.  For some it’s the news on their clock radio, and for others, a shrill insistent beeping which drives them mercilessly from the arms of the land of dreams.  Since I’m deafblind, my alarm is tactile.  Typical alarms wouldn’t work for me, neither would the special alarms designed for deaf-sighted people.  I need a more hands on— or in my case— paws on approach.

My face is snuggled into my warm pillow, when suddenly, the blankets are whipped away and a cold nose is pressed against my neck.  I want to ignore it, I’m still so tired.  I know from past experience, that this is a bad idea.  Before long, three dogs are piled atop me.  The golden retriever is poking me repeatedly with her nose, the lab has removed the pillows from under my head, and the Doberman is stomping on my legs…. Looks like I’m up!

When hearing or sighted people get ready for the day, it’s a multi-sensory experience.  Y’all are champions of the art of multi-tasking.  You eat your cereal while listening to the news and while checking email.

A deafblind life is a more linear life.  I can’t use my braille display to read email while eating cereal unless I want milk in a braille display, a several thousand dollar mistake.  I can’t brush my teeth while listening to the news.  I can’t walk and text.
I get ready for the day just like anyone else, but instead I do tasks one at a time.  I am a wiz at keeping to a schedule, and have time management down to a science.  The Keurig makes my tea while I prepare breakfast for the three hungry dogs.  I slide into my giant claw foot tub smelling of apples and sip a cup of very strong black tea, while trying to wake up.  My clothes are simple— I’m a tom boy and proud of it.  Everything I have matches everything else.  I throw on clothes, chuck my lunch and braille display into my bag, harness up Soleil— she’s the lab— and bribe the golden and the doberman with bones before running out the door.

The seasons are starting to turn down here in the southern U.S.  Soleil starts out almost at a run.  We wiz passed sidewalk cafes— quiet in the mornings.  She stops at the corner and we make the three blocks to the coffee shop in the blink of an eye.  I can smell the coffee, and decide I need a cup.  I tell her to “find the coffee,” and she makes a hard right.  We head to the counter and I hand the barista my phone and small keyboard.  He knows the routine by now.  A triple shot iced latte with almond milk, and a cran-orange muffin.

After that, we are out again, and arrive at the bus stop with a couple minutes to spare.  I set down my backpack, retrieve my braille display from its depths, and wolf down the muffin before loading the GPS app on my phone which will allow me to track the buses movements so I don’t get let off at the wrong spot.  I’m replying to a text from my coworker, when Soleil stands up and hip-checks me to let me know the bus has arrived.  We head for the door and she finds my seat.  I watch the streets go by in braille, and when we get to the right spot, I reach up and ring the bell, so we can get off and transfer to another bus.

Eventually, I arrive at work.  I’m working with N today.  She’s one of my favorite ASL interpreters and one of my best friends.  I tease her about her hair, after I check to see if she’s changed it.  The woman has hair ADD and is always doing wild and different things with it.

I use ASL tactually.  I place my hands atop the signer’s hands and touch them to feel what people are saying.  People ask me if emotions can be conveyed this way and I can say for sure YES!!  I have seen crying hands, angry hands, laughing and teasing hands.  Hands can scream, and they can also whisper.
My Orientation and Mobility class is going to the grocery store today, so we all go back out, load up on the bus, and my interpreter and I spend the next two hours stalking my clients through the grocery store to ensure they are safe.  The interpreter tells me things about the client’s use of their cane, interactions with the public, facial expression, etc.  This way, I have all the information I need to be an effective teacher.

Back to work we go, and it’s time for a two hour meeting.  Each person in my department introduces themselves with their sign name.  This is commonly a name that mixes a sign with the first letter of a person’s name.  My name is Rox’E and my sign name is the “R” handshake on each cheek because I have dimples.  Because tactile interpreting is so demanding, I have two interpreters for long meetings.  By the time this one is over, I’m exhausted, because while there are two interpreters, there is only one of me.

But there is no rest for the wicked!  It’s time to make groceries.  Many deafblind people use the services of an SSP.  SSP stands for Support Service Provider.  This is a person who acts as a Deafblind person’s eyes and ears in public.  Some SSP’s do sighted guide, others just explain the environmental goings-on.  Soleil has the guiding down, so my SSP is mainly responsible for driving and for describing things.

N is also my SSP.  We load Soleil into the back seat of her car, and after a quick stop for caffeine, we are off.  N’s newest musical craze is a woman called Meghan Trainor.  She sings a song called All about the Bass.  It’s not about fish, as I first thought, but instead is about the low sounds of music, and butts figure in there somewhere, but don’t ask me how.  N and I drive around, windows down, and she is teaching me the lyrics to All About the Bass in ASL.  So we drive and sign until we arrive at the store.

When we arrive, we get a copy of the sale paper, and she converts the written word into ASL.  She makes sure to point out all the bakery items on sale, and tells me that the muffins look good.  She’s bad for my diet!

We wheel the cart around, and as I’m picking out squash, some woman comes up to us and starts in on a long speech about me and how I’m so inspirational and that “The lord must have sent me to earth because I’m his special angel.”  I really try hard not to roll my eyes or to make a bad face but it’s a lost cause.  We make an escape from weird angel lady and head for the ice cream.  Someone stops to say that ASL is beautiful.  My SSP was just explaining to me about the kinds of toilet paper they have, but OK, beautiful toilet paper it is, then!

Eventually we make our escape, load the stuff back into N’s car and head back to my house.  N sticks my groceries on my porch, and I go inside to let the dogs out to take care of business.

While putting away groceries, I notice that N has gotten me a larger size of frozen peaches than usual and that she has managed to forget to put my muffins on the porch.  I bet they’re still in her trunk…

After letting the dogs back in and refereeing a game of tug between Soleil and Laveau, the doberman, I read email, make dinner, do the chores people all over the world do before bed, and crawl between the sheets.  My braille display is next to me, and I’m excited to continue my reread of Harry Potter for the fiftieth time.  My dogs nestle around me, Mill’E the golden on my feet, Soleil sharing my pillow, and the Doberman in her crate because snuggling is for lesser mortals.  Tucked in, surrounded by dogs, I fall asleep, readying myself for the day ahead.

On Advocacy: When to Fight Back and when to Let Go

03 Saturday Oct 2015

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This post has been a long time in coming, because I believe it relates to many aspects of life – employment, education, transportation, access to public facilities, and so on.  Many of us, including me, have had to fight to get the services, access, or technology that we need to be productive classmates, employees, or members of society.  This blog post has been inspired by a recent event in my own life, and I am going to be purposefully vague about it; for those who know the whole situation, please keep it to yourselves.

 

Advocacy is essential to people with disabilities being productive members of society.  We may travel differently, use different skills, have cool gadgets that talk or vibrate, but beneath all that, we would like to not only be included but to feel included in academia, athletics, the workplace… even reality TV.  Sometimes we request accommodation that would be required for such inclusion, and it’s provided with little or no fuss.  Sometimes we have to fight harder for such accommodations, because to be without them would mean that we cannot be those included, productive people that we know that we are.

 

And other times, when the accommodation is more of a preference (even a strong preference) than a requirement… what do we do then?  Do we force that reluctant and unwilling university professor to accept us in that class?  Force an employer to provide additional technology above and beyond what they have already agreed to pay for?  Or is the best advocacy to push back by finding our own workarounds, by taking a different course with another professor or finding alternate sources of funding for that technology?  Sometimes, one action is appropriate, and at other times, the other is.  On other occasions, moving on to other pursuits is essential both for logistics and for the mental energy and stress that accompany fighting for access.

 

I know people who believe that fighting for access to anything for everyone is important and essential.  Without people like them, we wouldn’t have made the advances we have to education, public access, and the workplace.  But not everyone has the strength or inclination to advocate in this way; some prefer to advocate by finding ways around the obstacles placed in our path.  Unfortunately, still others take no for an answer and live as though no one will ever accept them.  This fatalistic view bothers me more than anything, because it perpetuates the idea that we will go away if we get turned back.  And while I believe that pushing back and demanding access is important and essential, picking our battles is even more crucial.  What does it benefit anyone if we are granted access to one aspect of life for no other reason than because it’s mandated?  Does it not speak more to our tenacity and courage that we find ways around those roadblocks that get placed in our way?  I’m not talking about making martyrs of ourselves, but finding the way to maintain our dignity while allowing our academic institutions, workplaces, places of leisure and modes of public transportation to realize that we are human first and disabilities second.

 

I don’t have easy answers to any of these questions, as my own choices regarding self-advocacy would be considered too polite by some and too demanding by others.  Some would tell me that finding ways around the word “no” is not my responsibility.  And yet, I find that such times give me an opportunity to prove not only to others but to myself that I am stronger than the word “no”, and that I can be creative when it comes to finding solutions to access concerns.  Sure, I might ask a friend for help in a pinch, or might even have to push back and demand my right to access… but until such point as I am considered a colleague, a shopper, or a student first and a blind person second, I find proving the naysayers wrong incredibly rewarding.

 

For those who DO fight by demands and demonstrations for reasonable access and accommodations, I thank you, because my life would not be as well-rounded without people like you and those who’ve gone before.  For those who request access by proving by getting kicked down and getting back up that classes, job duties, and independent life ARE possible, even essential, I thank you because you give me the courage to go on another day.  For those who decide after weeks or months or years of fighting that it’s no longer worth it, and blaze your own path, you do show remarkable courage yourself by realizing that it just isn’t worth it anymore; you are not a failure, so pick yourself up and blaze a new path for yourself.  But for those of you who just take no for an answer, just because it’s hard, don’t get in my way, because in effect you are part of the problem; obstacles are placed in our path due to the ignorance and unwillingness of a public that think we should be hidden away in institutions or treated like angelic beings for getting out of bed in the morning, and laziness and apathy perpetuate this.

 

Perhaps I’m more of a fighter than I thought…