The Role of Nondisabled People in Disability Awareness and Rights

The Role of Nondisabled People in Disability Awareness and Rights

The focus for many in the disabled world is rehabilitation, inclusion and development of technology, techniques policies that protect and empower the disabled person. These are all true and valid endeavors to pursue. As an adult, the more I explore my disability, my needs and my rights; I keep coming back to the role of nondisabled people in disability awareness and rights. There needs to be a push to educate the nondisabled. They also need to know about the technology available so people with disabilities can participate in the community. They also need to know about the rights of the disabled so they are more understanding and accepting when we exercise those rights. The more the nondisabled know, the more people with disabilities will be included in daily life. With the education of the nondisabled, disabled people will be more comfortable exerting their rights and take their place in the mainstream on equitable footing alongside the nondisabled.

I have been hard of hearing since birth. I have moderate/severe hearing loss with unilateral hearing. I was fitted with a hearing aid at three years old. At that time education was focused on oralist approaches to rehabilitation. Therefore, I also received early intervention classes to make the most of my residual hearing. It worked—or so I thought. For years I relied on my hearing aid and oralist/auditory skills to “get by”. Though I was keenly aware that there were times I misheard conversations when interacting with people and dialogue when watching some of my favorite movies.

For years I basically ignored my rights to hear what everyone else heard and the growing availability of assistive technology beyond my hearing aid to help me do so. I was only mildly aware of their availability. That is, I saw the sign in the windows of public places indicating they were available as needed. It took me ten years from the time I started using closed captioning at home to even think about using the service in public movie theaters. I felt like an imposter asking for the device. I worried the theater employees thought I was faking it. It took me a while to come to the realization that judging me was not their job. But asking for services was my right. So I finally asked for the device.

The device I was given was on a long bendy stick. After they programmed it for the movie my husband and I were seeing, I brought it to our seats. I fiddled with it until I could see the captions in the view finder end just under the screen—similar to how I watch captions at home. I was enjoying the movie using the captions when I needed to. The device did not obstruct my view of the rest of the screen; it didn’t bother my husband or anyone else that was watching the movie.

My husband told me later that he heard the couple behind us whispering well into the movie. He didn’t think much of it until an usher suddenly appeared and politely but summarily asked us to desist from using our “cell phone” to record the movie. I was momentarily flustered and reached for my phone thinking it was on or somehow disrupting the movie. My husband was equally baffled. But just as quickly the usher appeared, she abruptly left after observing the device I was holding. This time my husband heard the usher explain to the couple that the “cell phone” I was using was an assistive device so I could enjoy the movie. I didn’t hear this of course. My husband, knowing that whispering to me was fairly futile, told me what he overheard later. So I spent a good portion of the rest of the movie a bit uncomfortable and disconcerted thinking about what was wrong. It took me a while to shake it off and actually concentrate on the rest of the movie.

Later, after my husband filled me in on what I did not hear, we had a talk about the incident. I was glad I requested the device. I’m not totally dependent on it to understand movies but, it made it so much less work. That probably sounds strange—enjoying a movie is work. But really, as much as I am auditory and enjoy movies and music—being attentive to any kind of sound is work. I needed the device for those key moments in the movie when the dialogue was too fast or the intonations were difficult for me to catch. But I still went back to the thoughts and actions of the people behind us. I can’t believe that the people behind us just didn’t know. The assistive listening sign was on display at the ticket counter for everyone to see. Did they not wonder and figure out what that meant? The double c closed captioning symbol could be found on any TV set or DVD these days. Even if they don’t directly use it, they will see it setting up a TV or starting a movie.

People with disabilities have come a long way. We have made gains in exerting our rights to education, demanded public policy reforms, and been the impetus in a whole sector of technology development. All of this so we can lead independent, productive lives with pride. But we don’t live in a vacuum. People without disabilities need to be part of the equation too. We need the focus to also be on educating our nondisabled coworkers, neighbors, and community members. When everyone is educated about issues important to people with disabilities, uncomfortable misunderstandings that make people question their place in the community happen less frequently. What will happen more is everyone will participate more fully and comfortably in civic life as equals.

Faking It

Faking It

I have a borderline moderate/severe hearing loss with only one visible ear. As a woman with the social acceptance of having long hair, I have kept both my ear “stump” and hearing aid covered when I want to. Early intervention during the oralism push for the hard of hearing in education meant that I developed good compensatory auditory skills as a result of learning to use my residual physical auditory capabilities as much as possible. This has made me pretty good at faking being a hearing person. A lot of times people forget I cannot hear—even those close to me. I even forget. Because of my auditory skills when I do hear something, at times I only hear part of it and fill in the rest. Sometimes I guess right and no one is the wiser. Conversely, at times I guess wrong and give an awkward answer to a question or contributing statement. I know they asked a question, but I didn’t hear all the words. I just used what I did hear and background knowledge of content and language to guess at what was said. That’s why sometimes my responses don’t make sense.

I spent years doing this and fooling everyone—even myself–into thinking I could hear more than I did. This is why it never occurred to me that anything I heard (or didn’t hear) wasn’t the same for everyone. Don’t get me wrong, I did realize that there were awkward moments between me and other conversationalists where they became confused or annoyed by something I said or did and I was equally confused or embarrassed over what I said or did wrong. This led to years of unpredictable, intermittent anxiety in conversations. I just accepted it as my “normal” and never thought what could be done about it.

However, as a graduate student I was evaluated to receive services related to my hearing loss. As part of my evaluation I was given a questionnaire. One of the questions related to if I could hear everything on TV easily or something similar. My immediate reaction was to say yes of course. But then out of curiosity I tried an experiment. I turned it on the closed captioning feature on the TV for the first time and watched two movies.

I was pleased; I had heard most of both movies correctly. However, there were some key parts where I looked at the captioning carefully because I didn’t quite make out the dialogue or background in and of themselves. Had I exerted more effort and used my acquired background knowledge and vocabulary of the subject to fill in what I didn’t hear likely it would still made sense—I was adept at that—it just wasn’t what I actually heard. From that point, I watched TV with the closed captioning on—something that had never occurred to me before.

My family was a bit disconcerted at first when I started using it given I had never done so before. They assumed I could hear it all this time at the sound level they used and didn’t quite understand this change to “dependency”. But they grew to tolerate it. By the time I met my husband I had already been using it for a few years. So he accepted it as the way I would always watch TV though he also had to get used to the printed words running across the screen during his favorite programs.

I have been faking it for years. Pretending I could hear in a crowd. Pretending I could hear when a motorcycle whizzed by, Pretending I could hear when someone lowered their voice. The bare bones reason for this is that I thought I was supposed to hear. I thought my hearing aid was enough. I bought into the ideal that hearing was the ultimate end goal—the basic force behind oralism philosophy. I’m not physically equipped to be hearing and I won’t pretend I am anymore. I am even less equipped physically or philosophically to be Deaf either. My only choice really is to enjoy a happy medium. I hear what I am meant to hear. For the rest I’ll unabashedly use the supports offered—like closed captioning. What a relief!

Equity, Community and the Disabled Parking Spot

I just got back from a wonderful family reunion in Italy. It was great to see family and friends after so many years. Much as I enjoyed the trip and was focused on family, Being Italian-American with a disability, I have always had an abiding interest in cross-cultural views of disability. I’m not a wheelchair user but signage regarding wheelchair access is probably the easiest thing to find. In the small, Sothern medieval town of Agropoli, I found a parking space marked with the universal wheelchair symbol in the familiar blue.
But something was different from what we see here in the States. Under that in yellow was an additional sign asking “Want my space? Get my handicap! Social Awareness Campaign Department of Social Solidarity” A little blunt maybe but it sent a message. I was first and foremost gratified to see that it was spelled out that a person’s right to the space was supported by an official entity. I think we forget that in the States. So the endorsement lends a certain validity that I don’t think is appreciated fully here. Also, it spells out that the space was marked to address a bona fide necessity—not convenience—making the issue a matter of equity among citizens.
I will admit, as a non-wheelchair user—I don’t have any mobility issues of any kind to prevent me from going about my daily routine unassisted—I have been envious of those spaces. Anyone who lives in Los Angeles knows that life revolves around driving and parking is everyone’s worst nightmare next to gridlock. So it is that I have circled parking lots and eyeballed empty disabled parking spaces for what felt like the millionth time barely admitting to myself I wished I could legitimately snake my car into the space and get on with my needed errand.
But I haven’t, for a couple of reasons—my mom and my dad. Both of them acquired age related disabilities. My father acquired cardiovascular disease which among other things caused him to need to use the disabled parking spaces first so he wouldn’t have quite so far to walk and save his energy and risk of falling and later towards the end of his life so he could get in and out of his wheelchair comfortably—a necessity if he wanted to go out at all. My mom could use the spaces. She still drives but persistent vertigo and mobility issues make her at risk for falling and fatigue. She tells me she refuses to use the disabled parking spaces though—and she told me why. Though one day she may absolutely need those spaces, as long as possible she wants to keep them open for people in wheelchairs who she feels need them more. That’s her choice. That’s her vision of equity for all.
She also told me this story. When my father was ill and unsteady on his feet and in possession of disabled parking placard, but still mobile enough to not need a wheelchair they went out to do the grocery shopping—an errand he enjoyed. They attempted to find a disabled parking space so my father would not have to walk far. They found one almost directly in front of their store, but it was occupied. Inside the car devoid of any disabled placards was a young man chatting on a cell phone. My mom, driving her car, did not stop but continued circling and found another spot farther away from their store.
As my mom helped my dad walk across the lot, they passed by the same car with the young man still chatting away. My mom, an immigrant and second language speaker, did something she usually tries to avoid—she confronted the young man. “Why you parked here? My husband need this spot because he cannot walk well.” The young man startled at my mom’s disapproving tone and glanced at my dad just behind her holding his walker for support, fatigue and discomfort already lining his face. He dropped his phone, faced flushed. “Oh I’m sorry, I’m sorry” he mumbled as he clumsily placed his car in reverse and left the parking lot.

Whether you are able bodied, walking but unsteady on your feet or a full time wheelchair user, please consider the equity those spaces are designed to provide. Don’t look to an official injunction from a government entity to tell you if you merit the spot. Don’t wait for a stranger to tell you, you don’t. We are becoming a community asking for Big Brother to impose common sense and common courtesy on each other. If you need the space, use it. If you don’t, leave it. Everyone will have a better day because of your choice.

Let’s Talk About It

In my job, I am responsible for identifying and discussing disabilities in school children. I in my personal life, I make it a point to name and discuss my disability when the occasion or need arises. As policy at my job, a student’s disability is “confidential”. I understand why this policy is in place. Parents and students—especially those acclimating to a new eligibility—can be extra sensitive to discussing it and out of concern for their child’s well-being  parents may be reluctant to “giving it a name” so to speak. They fear their child being “labeled”. Naming it makes it more real, more permanent and more open to negative connotations brought on not necessarily by the disability itself, but by other people’s reactions based on misinformation, misinterpretation and fear. I understand. I do.

As difficult as it can be though, I advocate for personal knowledge and discussion. I think it is only right that the person with a disability has a name for the symptoms that they experience personally. You cannot “hide” the disability from the person experiencing it no matter what the name. The “label” can answer so many questions about what is going on with the person’s own body and mind. Knowledge—accurate knowledge—creates ownership. One of the best things I experienced was talking about my disability when I was as young as eight years old.  I stood in front of other eight year olds and said I was born with things like “Goldenhar’s Syndrome” and “Hydrocephalus due to aqueductal stenosis”. Was I a young Einstein? No. Did I actually understand what any of those terms meant with any medical specificity? Not really. Without those words, my teachers could think of me as “lazy” when I didn’t follow directions when in actuality I didn’t hear them. My peers could think of me as weird and at fault because I didn’t speak like they did or move like them. So why should they include me if I wouldn’t conform?  What talking about it did was give me the words to advocate for myself when it came to my disability needs. I could correct the bullies not by giving them back the hate and fear they were giving me but by granting them the words to make my disability comprehensible to them and part of their experience. My label also made it possible for me to ask for what I needed to learn or function with my teachers and other adults.

Labels help people without disabilities as well. We humans by nature categorize as a way to determine how to act. I have a hearing impairment. Oftentimes I don’t hear people when they are on my right side as I have unilateral hearing. When strangers don’t know that, they may treat me as negatively as any other person who might “ignore” them or just walk away insulted. These acts devalue me as a human being. Conversely, if they know I have a hearing impairment, they have a number of constructive options. They can position themselves on my “good side” before they speak to me. They can tap my shoulder to get my attention. These options show me that I am respected.

In each of the scenarios I am labeled. In the first scenario I am labeled “rude” and rejected. Both of us miss out on making a connection. We miss sharing our personalities and strengths because of a lack of knowledge on their part. But that is not their fault. It is mine. Often when I see people turn away from me like that, whether I realize why or not, I end up thinking “their loss” and am offended as well. They blame me for being rude when I wasn’t and I blame them for acting unfairly even though they do not share the same world view that I do which is based on specific experiences.

In the second scenario, I am labeled “hard of hearing” and accommodated with understanding. We communicate effectively and share a mutual respect based on equity. Once we do that, we can move past my disability and share common interests and individual strengths—and even flaws. The second scenario requires both of us to stretch a little beyond what may commonly be “our comfort zone”. I have to understand that other people may not have the same experiences as I do. With that experience, comes specific vocabulary. I have to give them the appropriate words to describe who I really am based on my experiences. They have to accept those words and understand them as a positive experience, potentially altering the world view they may have had before our encounter.

Words are one of our smallest forms of communication. Yet they have a lot of power. Words describe and categorize our world and experience. In and of themselves, words are neutral, objective. We however, have the power to impart meaning on words. We have the power to use our words for good, to unite, to create understanding, to make positive connections. The labels we use as people with disabilities are powerful. Sharing them, using them with nondisabled people can create connections, understanding and respect. Not using them, can create fear, misunderstandings and division. It is up to each of us—disabled and nondisabled to choose to use our words to empower or devalue. What do you choose?

 

 

Why I Stay

Why I Stay

With the dawn of the Betsy DeVos era of education, it seems to me like my profession, my colleagues and my students are all working in a hostile environment. Hostility can start with speech. Based on her own words, I feel Betsy DeVos cannot be relied on to uphold the special education laws that are needed to guarantee the rights of students with disabilities a free and appropriate public education.

I don’t know if she will be successful or if the outrage of parents, teachers, advocates and people with disabilities will be strong enough to stop what I feel is a backslide into prehistoric times of special education history where students were denied a basic education and sequestered away from places of education.

But I do know why I stay.

I stay because I want my students to know that someone welcomes them.

I stay to show my students that they matter enough to someone to put them first.

I stay because I want them to know that with hard work on their part and understanding on mine, they can achieve their goals.

I stay to show them I care if they are bullied or overlooked, and I will stand up for them.

I stay to show them they are more than the sum of their test scores, and I will fight to educate the whole child.

I stay to build on their strengths, not highlight their weaknesses.

I stay to give them opportunities to love learning and experience success.

I stay to show them how to work with their disabilities — not deny them — to be successful.

I stay to show them that perseverance does matter and will show results that will be revealed in time.

Despite Betsy DeVos, despite the hostile environment, despite the ambivalence and paucity shown towards my students, I stay to stand in front of what I believe is the impending decline so my students are supported.

My Family, My Disability, My Choice

         We just ended another round of parent conferences in my school district. It’s just another day in the life of a teacher, right? After 16 years of them, I have gotten into the habit on reflecting back on some of the more memorable ones. The ones that have been difficult where the parent and I fail to see eye to eye, I try to learn from. The ones I am most proud of—most proud of the way the parents responded, I try to share and show my pride in the parents.
          Early in my career though, a conference that was a point of pride for me turned into a disappointment for the reaction I got when I shared the experience with a colleague.
          The parents I had just had a meeting with were easy to talk to and open. Having had some interactions with the mom before, I expected this from her. I enjoyed her also because she allowed me to dream for my students. She had an intellectual disability. She was raising two young daughters and was involved in their schooling. She never missed meetings and whenever I suggested something to help her daughter, I soon saw evidence that she was trying. I knew she had help at home. She had managed to connect with an agency that provided her with a “coach” of sorts. This person frequently came with her to meetings. She never took over the meetings but listened carefully to our conversation and discussed later with her how she was going to follow through with what we had decided. The evidence to me that it worked was in that her daughter was one of the highest achieving students in my class.
          Now, meeting the husband I continued to admire their palpable mutual respect for each other. She led the meeting and even translated for him at times as his English was limited. They spoke in respectful tones to me and each other asking thoughtful questions and making valid contributions. It was obvious they loved each other and loved their children.
          The next day in the teacher’s lounge, as we were sharing stories of our students and families, I started in on how proud I was of this particular couple. I started to explain why but I didn’t get any farther than mentioning that the mom had an (unspecified) disability when one of my colleagues burst out saying “why did no one have her tubes tied?!” I was dumbstruck. I felt a lump in my throat and left the conversation quietly saying I did not agree with her.
          After I got over the shock of hearing those words and forgave myself for not addressing the issue, I grew to understand that she just didn’t know.
·      She didn’t know that the basic human right to have (or not have) children was basically denied people with disabilities in the early 1900’s through forced sterilizations.
·      She didn’t realize people with disabilities CAN learn to take care of a child no matter what their achievement in school, mobility or physical issues—just like able bodied people learned.
·      She didn’t know the proper training or support for people with disabilities is available (if needed) so they can give their children the love and support needed to thrive.
·      She didn’t acknowledge that while people with disabilities may need help to be successful parents—so do able bodied parents.
·      She didn’t know I had a disability and wanted more than anything to have a family and was mortified to think that strangers wanted and potentially could make that decision for me based on my DISABILITY rather than my ABILITY.
·      Lastly, she didn’t know my husband and I were trying to adopt. Not because I couldn’t conceive because of my disability, or we were afraid of having a child with my disability. But because we simply wanted a family, felt we had a lot to offer in terms of love and experiences—including my experience with disability—and felt adoption was the best way to become a family.
I missed the opportunity to say these things to that colleague. My hope though now is that we all realize and respect that we can have the same desires whether we have a disability or not. . By extension we all deserve the right decide to act on those desires the best way we can so everyone can live the life that fulfills them. It is part of what makes us all human.

If you want to follow my family’s journey to adopt, visit our webpage at: http://www.hopefullyparents.com/maria-eugene

Hearing in Gray: Being Hard of Hearing in a Hearing World

“Sister, I’d like permission to tape record your science and math classes.” She eyed me askance from inside her wimple. I went on to explain that my tutor noticed that I was missing some information in my notes because of my hearing loss and that she wanted to know exactly what was being taught so she could help me take better notes.
          It had been years since I had Special Education services. This was an innocuous request but, I hated asking for this accommodation. Her facial expression alone made me feel like I was asking for a great imposition. Add that to the extremes of the middle school years where I was hyper aware of my disability and others people’s interactions and reactions to it and I felt beyond awkward.
          It seemed like forever passed before she answered. In reality it was probably no more than a pregnant pause. Slowly, in the very measured, confident tones of an elder speaking to their charge she said, “I think if you tried hard enough, you can hear enough.” Bam! My middle school brain reacted “If I tried hard enough I could grow a second ear too.” I hadn’t been in catholic school that long just having transferred after seven years of public school but I knew enough to keep my thoughts to myself. Outwardly, I politely thanked her I walked away irrationally thinking that if she wasn’t going to try to accommodate me, I wasn’t going to try period. So I didn’t.
As an adult, I realize I had wasted the two years I was at that school in part at least to this nun’s ignorance and my inability to constructively advocate for myself. That wasn’t the last time I heard that sentiment communicated to me. As a person with unilateral hearing and a hearing aid, my ability to hear changes from each situation and can be compromised by such overlooked things as background noise, lighting or the position of sound. So several people have made comments—sometimes much more sensitively—on my “on again, off again” hearing.
All these years later, this is what I’d like to say to that teacher in response.
1.    I was born with my hearing loss. Luckily, it was identified at birth. I was fitted and trained to use a hearing aid and make the most of my residual hearing for years before coming into your class. I have done and continue to do all I can to “hear enough”. My hearing will never be “perfect”. It will never be “normal” This is as good as it gets. I need you to meet me half way to bridge the rest of the gap.
2.    If I didn’t hear it, as far as I am concerned, it didn’t happen. I say this to my husband tongue in cheek as a joke when he complains I don’t listen to him. But seriously, ironically I am a very auditory person. In the daily hustle and bustle, even I forget that a glare, a lowering of the voice, a turning of the head or a car horn in the background will compromise my hearing more than it will yours from one minute to the next. I never had two ears but then again, you never had my ear. So if I didn’t hear it I am not aware there was anything to hear. I try to remember and be aware that people with two ears hear more and differently than I do. I need you to meet me half way and be aware that I hear less and differently with one ear as well.
3.    This next thing is not so much about what I should have said, but what I should have done. I should have told someone. Being in middle school, I was very self-involved. I didn’t appreciate the network of people I had in my life that could advocate with me. Had I told my mom or another person who understood or had experience with my disability they could have passed along their knowledge of my experiences and helped this nun to understand what was beyond the realm of her experiences. Now I value telling my story and sharing with others my experiences—both those close to me and strangers. I know now the more people who know my story, the less I am alone. I don’t have to do it alone and I accept that sometimes, it is more effective for others to speak my truth with me for two voices are stronger than one.

Finally to that nun, a teacher who didn’t know any better all those years ago, I still remember you and that very short and seemingly off hand exchange. I was frustrated for many years not just from that encounter but from the buildup of many similar encounters where I felt, devalued, voiceless and powerless. Now I know my experience is different but valid. Now I know I can speak up and ask for what I need as worthwhile. I know that I am not alone. I hope you and others I meet know that too. 

How My family is Passing Along the Ideals of Disability Acceptance and Inclusion

         

“You’re diseased!” This was the proud proclamation made by my smiling kindergarten age nephew several years ago. I laughed at how proud of himself he was as his mom flustered and hastened to explain to him upon hearing him that he had used the wrong word. To this day, replaying that scene in my mind amuses me and not just because I was an aunt hanging out with a cute little boy with dark blonde curls. As I talked later with my sister in law about his outburst, I felt a degree of pride in my family and satisfaction that my disability was useful—as I had always maintained.

           
            My nephew started school in an urban school district that year eager, inquisitive and outgoing. Inside, he learned and participated and was a whiz at math. Outside he spent his energy on the yard running and jumping on the apparatus and making friends. The adults thought he was sweet. His classmates thought he was cool. My nephew had it made.

            He always gravitated towards older kids so he always looked for them on the schoolyard or in the neighborhood park. One day on the yard he had seen an older child with an obvious disability. All these years since his mom told me this story, I can’t remember the nature of the disability and really that’s not the point. The part that stays with me today is his reaction and his parent’s response to the opportunity presented.

            All accounts describe him as taken aback when he saw the older child. He watched him from a distance trying to process and understand what he saw in the other student. Obviously he noticed the differences in him as compared to the other students he would naturally gravitate towards. To his credit and his sweet nature, he did not disrespect him. He was however, naturally curious. So he turned to the one person his five year old mind felt had all the answers—his dad, my brother.

            Despite having grown up with me and my comings and goings to the hospital or doctor’s office, my brother was surprisingly uninformed of the medical nature of my disability or disability in general. As it turned out, that wasn’t the most salient point for my nephew. What appeased him was when my brother suggested the mystery boy would like soccer and video games like he did. He reminded his son that “Auntie Maria” looked different, spoke a little differently and had a hearing aid because she is disabledjust as the boy was.  He pointed out that even though all these things about me were different, obvious and true, “Aunt Maria’s still pretty fun and cool, right?” So, he ventured, “The boy at school could be fun to play with too, you just need to go up and talk to him like you would any of the other cool kids you play with.”

            My nephew has always been one of few words but careful thought. He went back to school and watched that child some more. If he noticed that child so did other classmates. He may have even witnessed other kids being mean to him. I do know he continued to go to my brother with his questions and allowed that to form his thinking and guide his actions. I don’t know what happened to that boy or if my nephew formed some level of friendship with him. However, after the moment where he mistakenly proclaimed I was “diseased”, with equal earnestness he declared, “I like you. You’re pretty”.

            My nephew is now in his 20’s and a college graduate. Thanks to his dad and mom, he has turned into a thoughtful and compassionate young man. I like to think his openness at that young age, and my brother’s freely shared perspective has passed on the ideals of acceptance and inclusion regarding people with disabilities through the next generation. May my nephew’s perspective open doors and allow others with disabilities know they are welcomed and valued.