Hearing Elmo would like to once again welcome Ruth Fox as guest writer this week. Ruth is a passionate disability advocate and also a photographer! I have enjoyed getting to know her even better through her nature photographs. Recently, Ruth reached out to me to give me some much needed information on mobility issues. If you would like to communicate with Ruth you can look her up on Facebook or email me at denise.portis@gmail.com and I will forward your email to her. Ruth asks some important questions about access issues:
Who has a right to make our choices?
My husband and I are “young” seniors, who have dealt with multiple disabilities our entire lives. Some of these disabilities are becoming more visible as we age. Both of us have worked hard to reduce our challenges. This means that we have had to address our barriers regardless of what other people would like to see us do. We embrace the freedom that mobility and technology accommodations provides us. Some of our disabilities require alterations to daily living routines and traditional ways of eating.
We enjoy sharing information with other people, so the frequent question “why?” provides opportunity to talk, in general terms, about hearing loss, cochlear implants, Asperger’s syndrome, food sensitivities, and Mitochondrial Disease. However it isn’t always easy, because disabilities can be extremely variable. They fluctuate in response energy reserves, weather, degree of sensory stimulation, health, and mood and basically everything physical, mental and environmental. People tend to understand “total” easier than “partial”. Explaining hard of hearing, partially sighted, food sensitivity, weakness and discomfort is considerably more complicated than explaining deaf, blind, food allergies, paralysis or pain. The greater detail required to explain “why?” the more awkward and embarrassing it becomes.
Now the question: How do we make our choices for personal disability accommodation? Do we consider what works best for us, or do we deny what is best for us because of the comfort level of peers, coworkers, family members, acquaintances, professional service providers and society in general?
It is a work in process, but my husband and I have found what allows us to be comfortable and productive. It isn’t always easy, as we march to a different drummer, but we live life to its fullest.
Kyersten and Chloe at the “Candle Barn” in Bird-in-Hand, PA
Discrimination. Pronounced, the word even “sounds” ugly. According to the United States E.E.O.C, discrimination can fall into the following cateogries: age, disability, equal pay/compensation, genetic information, national origin, pregnancy, race/color, religion, retaliation, sex, and sexual harassment (U.S. EEOC, 2013).
For those of us with any kind of disability, the Office of Civil Rights enforces Section 504 of the Rehabilitation Act of 1973, Section 408 of the Rehabilitation Act of 1973, and Title II of the Americans with Disabilities Act of 1990. As I mitigate my own disabilities with a service dog, I was thrilled to see the ADA clarify specifics for folks like myself (See ADA 2010 Revised Requirements).
One of the more troubling truths about discrimination, however, is how quickly the “tables can turn”. Those who are often discriminated against can very easily become those who discriminate. It sneaks up on you.
Teaching the Teacher
The photo above is of my daughter, age twenty-three, and taken at one of our favorite “day trip” areas. Bird-in-Hand, Pennsylvania, is a quaint little village in Lancaster county that makes you feel as if you’ve stepped back in time. Kyersten is a young adult now and I’m pleased we are friends. She has taught me many things through the years as she usually presents tough topics with the poise and thoughtfulness someone twice her age would do.
I always welcome one-on-one talks with her, but in early 2010 I initially was NOT pleased when she informed me that I was discriminatory towards people who had normal hearing.
I sputtered, “Wha…?”
Like she tends to do she began to systematically present the proof. “For one thing, when you are exasperated with a communication problem, you call us ‘hearing people’. Makes me feel like a different species!”
She continued her argument by explaining that I often forget that people without disabilities can be just as big a champion for folks with disabilities as the individual themselves. This may be especially true of those who care for someone with disabilities.
Later, a discussion with my husband had me really feeling sheepish about my own apparent hypocrisy. “It’s perfectly natural to seek out people who struggle with the same things you do, but when is the last time you befriended someone without disabilities? You have OTHER things in common with people. For example, your faith, your background, and your profession… all put you in specific environments where you can get to know people and enjoy the reciprocal benefits of friendship.”
OUCH.
“License to Kill”
To “self-identify” is a topic discussed in many forums. Many believe that to do so goes hand-in-hand with acceptance and self-respect. One of my favorite “women of courage” buddies is a young woman by the name of Hunter. She and I both received our assistance dogs from Fidos For Freedom, Inc. Hunter was the first person I heard use the term “differently abled” instead of disabled.
I totally “get” choosing a more positive spin on a word many of us hate at times. However, I’ve also learned that because this is STILL the way the law identifies us (and protects us), I’m OK with being a person with disabilities. (Though like Hunter, I will quickly point out exactly how I simply do things differently…)
Labels – even those we pin on ourselves – can go SO WRONG, however. Once we start behaving as if our status “sets us apart” and in some way elevates us over another, we’ve really lost our purpose. Our goal is equality after all, correct? Many blogs I follow written by people with disabilities or who live with invisible illness, simply want to be accepted and treated normally.
I’m disabled and YOU are not… therefore I’m entitled to this, and This, and THIS. Obviously, a person who does this has missed the point. Yet, just as we may inadvertently reverse discriminate against those who live WITHOUT disability or invisible illness, we may choose to wear our “badge” as if it gives us free reign to disrespect others.
Guard your Tongue
Are you a person with a disability? Do you live with invisible illness? Does a chronic medical condition shape who you are? Do you have a service animal?
YOU are a person of influence.
Recently, I went to get a new contact prescription. I’m having to do so every 4-6 months unfortunately. As a result, I’m getting to know my eye care professional very well. At my last appointment with her encouragement for me to “see a specialist” ringing in my ears, she rolled her chair closer to me and said, “Can I share something with you?”
Immediately wary of the WAY she said it, I hesitated but said, “Sure! What’s up?”
She shared, “Until I started seeing you, I hated knowing a hard-of-hearing patient was waiting for me in the examination room. In the past, hard-of-hearing patients seem to be defensive, argumentative, and easily frustrated. I understand it can be hard to look through corrective lens with the Phoroptor as it means you cannot see my face to hear, but you are the first to not act as if it is my fault”.
I was stunned. I’ve always used humor to try and alleviate any discomfort others may feel as I enter an establishment with service dog and blinged-out cochlear implant. Yet later, I found myself wondering if I had ever treated someone poorly simply because I was frustrated.
Hopefully, my ability to laugh at my own fax pas and miscommunications will compensate for some of the bad experiences my optometrist had with people who have hearing loss. With regret, however, I could remember many times where I “blew it” and had a negative influence.
One rainy day, I entered a new building on another campus for a class and stopped at the security desk for directions. Before I could state the problem, the campus officer asked, “Why is that dog in here?”
Yeah. She could have stated it a little more diplomatically, but I became immediately defensive. I blurted out all the ADA information I knew about service dogs and then said with exasperation, “Where are the elevators for the classrooms above?” Several weeks later after classes were finally routine for me, I had to stop and apologize to her. I was out of line.
Every encounter you have with people at work, stores, places of business, and even church are an opportunity for you to be a GOOD influence. You set the stage for future encounters for these folks. We can be a good influence or a bad one. We shape future encounters for people just like us. Remembering that has helped me be a little more patient.
Bottom line, my point? Let’s practice what we preach…
I love Kermit. For the record, I loved Kermit before Miss Piggy loved Kermit. In the early 70’s, Kermit first poignantly croaked out that “it’s not easy being green”. Being green was something he could not help. It simply was.
This song has since been associated with people lamenting their own self-identity, yet coming to terms with “it being what it is”. By the end of the song, Kermit admits it’s OK to be green and that it is how he wants to be.
Am I OK Being This Way?
Something I have struggled with in acceptance of acquired disabilities is “the new me”. You see… I wasn’t born green. I can’t even say the transformation was similar to the beautiful miracle and mystery of a caterpillar changing into a butterfly.
And yet… it’s not like I asked to be late-deafened. It’s not like I asked to have a balance disorder like Meniere’s disease. But just like Kermit being green, it is what it is. There is no changing it.
So if this is me now, am I OK with it? Anyone with acquired disabilities ever struggle with that acquisition? If I asked for a show of hands, you’d first notice my own raised palm. I think you’d also notice a great number of hands. You aren’t alone.
Like many of you, I feel good about who I am much of the time. But I’d be lying if I said it’s always easy to be me. It’s not. So what to do?
Acceptance ≠ Resignation
I’ve never heard a person with acquired disability or chronic illness say, “This is easy”. It’s not. Yet do you know what I have discovered? I have this fuzzy, old memory of “life before disability” and IT STILL WASN’T EASY. My friends? Life is not easy. If you haven’t figured that out yet then you are still very young. Or, perhaps you are a frog.
I am discovering that acceptance of where I am (or even where I may end up), does not mean that I give up. Nor does it mean that I am resigned to an unhappy, unfulfilled life with no chance of ever giving back or having a purpose.
I get some “flack” with some of my readers about using the word “disability”. Rest assured, I welcome ALL opinions and discussion about the posts here at Hearing Elmo, as do the guest writers who participate. Some have suggested that using the term disability lowers one’s expectations and influences self-esteem. I understand the argument and point of view by those who believe this. I use the term because it is the terminology used by the ADA which ultimately protects my rights as a person with disability. It is about my freedom as a person who negotiates life a little differently. You may use disabled, differently-abled, special challenges, etc. In the end though it is green; though some may call it lime, olive, or chartreuse.
So today, August, 20, 2012, I am a person with disabilities. It’s not easy. But it isn’t impossible. Bottom line, because of who I am today, I compromise. I’m going to Hershey Park with a big group of couples from our church. I’m the self-designated pocket book holder. I won’t be riding any rides. I cannot. But I anticipate a day of fun and fellowship with other folks my age. I don’t choose not to go. For me, that would be giving up so it is not an option.
I don’t use the phone well, but I can use captioned phones, assistive technology, and my cochlear implant to make do. I use email a lot – and yes, FaceBook too. I walk like the world is in motion – especially on rainy days. Yes, yes, I know. The world IS in motion, but trust me! My earth’s rotation is faster than YOUR earth’s rotation. So I often walk with a cane. I have an assistance dog who counter-balances, and retrieves things I drop. I say, “Whoa!” a lot.
Don’t Pin a Super Hero Cape on Me!
Before you pin a super hero cape on me, please know that I don’t always have good days. I don’t always wake up and believe I can take on the world. I do not always look in the mirror and like what I see. There are times I worry about where I am in terms of what I can and cannot do. What is important, I believe, is what you do after having those very normal feelings. Worried? Totally normal. Depressed? This can be a very normal reaction. Pissed? Believe it not, being angry is a normal response to acquired disability. When you STAY worried, depressed, or pissed it becomes a problem. Don’t be afraid to talk to others. Perhaps you need to see a counselor. Maybe you need to do something just for YOU to work off some of that negative steam.
You will never hear me say it’s easy being green. It’s not. But acceptance of where we are allows us to then LIVE and even to give back – to be productive and have a life of purpose. Just like Kermit croaks, we may not be sparkly and flashy like others. Within each of us is the desire to discover and acknowledge that our being green – is OK. Perhaps even good.
It’s not that easy being green Having to spend each day the color of the leaves. When I think it could be nicer being red or yellow or gold or something much more colorful like that.
It’s not that easy being green. It seems you blend in with so many other ordinary things. And people tend to pass you over ’cause you’re not standing out like flashy sparkles in the water or stars in the sky.
But green’s the color of Spring. And green can be cool and friendly-like. And green can be big like an ocean or important like a mountain or tall like a tree.
When green is all there is to be It could make you wonder why, but why wonder why? Wonder, I am green and it’ll do fine it’s beautiful! And I think it’s what I want to be.
Dr. Terry Portis is director of the Center on Aging at Anne Arundel Community College (AACC) and teaches in the psychology department. He supervises 205 faculty and staff who serve 4,100 students each year. Dr. Portis has presented dozens of workshops and written numerous articles on marketing, program design, psychology of disability and health, personal development and technology. Prior to coming to AACC, Dr. Portis was executive director of the Hearing Loss Association of America.
Terry’s wife Denise has been a client at Fidos for Freedom since 2006. Terry has served on the Board of Directors at Fidos For Freedom since 2011.
When a person is matched with a service dog they have to make adjustments in their life, and so do the people who are around them. This is especially true for the spouse or significant other who spends a lot of time with the person matched with the dog. You may think the service dog will only change the life of the person you love. However, there are changes you should try to anticipate as well.
Be prepared
There are a few negative issues that one has to deal with when a service dog enters your life. First, service dogs are very noticeable wherever you go. Most places we go I find people to be open and accepting. However, there are small, bitter people in the world who enjoy confrontation and have a “know it all” attitude. They may think they know the law because their third cousin has taken some classes in college. Having to occasionally deal with these unpleasant people in public can be very frustrating. It may also be difficult for you to let the person you love deal with these issues by themselves. Denise spent a lot of time in training and I suspect because of decades of advocacy work, it does not bother her to have to carefully explain the law to someone trying to deny access. At Fidos For Freedom, they spend a lot of time making sure the clients are prepared for these scenarios. Even though service dogs are not as unusual as they use to be, Denise will still occasionally enter an establishment that has never seen a service dog for hearing alerts and balance assist. Because I’m her husband, sometimes it is hard to stand by and let her stand up for herself. It certainly doesn’t hurt to make sure that family members are aware of the ADA allowances for people who mitigate their disability with a service dog. There have been times that Denise has been oblivious to someone trying to get her attention to ask her to leave the store with the dog. If I’m in the vicinity, I have spoken up and explained that Chloe is a service dog and can accompany Denise.
Another thing to be prepared for is the planning needed to make even small local trips. In the summer avoiding hot asphalt is always a consideration. Looking for parking spaces near grass is a challenge. We also think about which restaurants have the best seating for us. All of these things become second nature, and I find myself thinking about these things even when I am by myself.
Enjoy the experience
These few inconveniences though, are worth it for the value that a service dog brings into a person’s life. It is reassuring to have another set of eyes and ears to help protect and alert the person you love. Service dogs build confidence and help reduce feelings of isolation that people with disabilities often experience. If I know Denise is away from home teaching or running errands, I know I can call her phone and Chloe will let her know the phone is ringing. I know if she falls or drops things, Chloe is there to assist. I actually worry about Denise far less now that Chloe is a part of her life. According to Rintala, Matamoros, and Seitz (2008), service and hearing dog recipients reduced their dependence on other persons. As Denise became more independent, I worried less and also knew she was less dependent on me. As I knew how much she valued her independence, I fully supported her training and match with Chloe.
A service dog can be a very positive experience for everyone. You also have the opportunity to be an advocate, to tell people firsthand what you have experienced and learned. Dogs that have the intelligence and temperament to be service dogs are special, and the kind of dog most of us have never seen before.
Finally, a service dog becomes a part of the family. Chloe is like an extension of Denise, so she is around all the time. As a result, I’ve become her buddy as well. She is pretty excited about my coming home from work each night. It reminds me of when my children were little and were excited that “Daddy is home!” Having Chloe in our lives has been an easy adjustment for me. Chloe has fit seamlessly into our schedule and the peace of mind I have knowing how much she watches out for Denise is really worth the wet doggie kisses she gives when our alarms go off in the morning.
Rintala, D. H., Matamoros, R., & Seitz, L. L. (2008). Effects of assistance dogs on persons with mobility or hearing impairments: A pilot study. Journal Of Rehabilitation Research & Development, 45(4), 489-503.
Sometimes? There is not a great solution available for positive advocacy.
This past Friday, my 21-year-old daughter asked me to go shopping with her. I’m always thrilled when she CHOOSES to spend time with me, so I agreed so long as it was the morning so that we could “beat the heat”. She agreed. She wanted to shop for new “under things” and I knew JCPenny was having a sale on these items. Kyersten, Chloe and I headed for Annapolis Mall to shop.
The bad thing about shopping in the “intimates” department is that there is not much room to maneuver. I was having some difficulty with my balance as well so I was just being extra careful about how much moving I had to do. Chloe does great even in confined spaces with the exception of that tail. I talk to her a great deal while we are out because it helps to keep her attention on me. Kyersten was busy looking at different styles available. My main job was to offer the occasional opinion and situate Chloe so that her tail didn’t knock things off with her loving “wag”. Chloe may not understand all that I say to her, but she does know her name and will wag as if she is paying attention to everything else I’m saying. Because my attention was on HER, and as we were in “tight quarters”, I was taken by surprise by two little girls who ran up and threw their arms around Chloe’s neck.
One little girl was about 4-years-old, and the other (obviously big sister) was probably 9 or 10-years-old. I stuttered out, “Oh! I’m sorry. She’s a working dog and cannot be petted right now”. The girls continued to squeeze and talk excitedly.
I tried to tune in a bit better and realized they were talking in Spanish. With my heart plummeting to my stomach, I held up my hand and shook my head NO saying, “Please don’t pet her. She is a working dog”.
The older girl stopped and tried to talk to me in English, and I understood “She’s a pretty dog”. At this point Chloe broke her sit/stay in order to break the choke hold. I was unprepared and went to my knees and caught myself on a rack.
With bras, panties, and tiny hangers attached to various body parts, I again held up my hand, shook my head no and said, “No please!” in a very firm voice. As I was still wobbling, I sat on my caboose to get my bearings.
The older girl said, “Oh … sorry” with some other words that I could not make out because of the accent. I did understand that she understood that Chloe was NOT to be petted. In Spanish she (I think) explained to her younger sister about Chloe. I think she realized something was amiss because I was now sitting on the floor with lingerie scattered around me. She left quickly with her little sister in tow.
I had Chloe brace so that I could get up, and asked my daughter to pick up some scattered articles. (Chloe could have, but I didn’t figure anyone else would want dog saliva on merchandise). Right as I was on one knee about to stand, the youngest came zooming around the corner with a squeal to squeeze Chloe again (who was now in a stand/stay and “brace”). I held up my hand and intercepted the young lady and my hand blocked her at the chest. Although I did not PUSH, it did stop her in her tracks. I said firmly with a head shake, “NO!” She turned and ran away.
I did NOT want to place my hands on someone else – let alone a child. I didn’t injure her, but I really felt out of options. I was “rattled” the remainder of the day. I was very upset with MYSELF that the resolution to this problem ended up playing out like it did.
When All Else Fails… Be Firm
I did look around for the youngster and never did see her or her older sister during the remainder of our shopping trip. When something doesn’t go according to plan I tend to beat myself up about it I’m afraid! I kept thinking about other options I may have had, and tried to think of what I might do should this happen again. (I’m open to suggestions – grin).
Sometimes we can try to advocate in a positive way – and the situation may just fall apart. Sometimes? You just have to be firm and resolute. We should always try to be positive and upbeat at the beginning…
“It would assist me in staff meetings if everyone would just pop a hand up before speaking so I can locate who is talking”.
“I can easily do my share of answering the phone if I had access to a captioned telephone that would provide understanding for when I don’t hear everything”.
“She’s not a pet. She’s a service dog and she can come into the store with me”.
Yet there are times we may have exhausted other options and have to stand firm.
“I need everyone to simply pop your hand up with a small wave before you speak. Thanks in advance”.
“I will require a captioned telephone so that I can do my job and share the task of answering the phone”.
“Here is a flier about what the ADA says about my rights. I’ll be over there shopping should you have any additional questions”.
I don’t think ANY of us welcome having to be firm and insistent, but there is a time and place for being firm. I try to always remember that there will be others who come after me that may also have accessibility issues. How I handle a situation may condition someone with normal hearing to respond to the next person they interact with who has a disability. There are times, however, when all pleasant and positive avenues have been closed to you. Even in your firmness… keep your cool. Keep it short and stick to the facts. My husband grins and tells me, “Denise! TMI. Keep it short! They don’t care about your background or care to hear your story”!
Accents, Foreign Languages, and Hearing Loss
The great thing about our country is the diversity. Because of where I live there are a large number of minority populations who speak English as their SECOND language. I do not speak an oral foreign language so I’m a little jealous of those who can! My mother taught high school Spanish for over twenty years, but her children never learned (much to her dismay). I have a lot of respect for people who speak English as their 2nd language. It is difficult, however, to understand language when an accent distorts the way a cochlear implant and/or hearing aid pick up the words. I have trouble understanding people with thick accents that may speak PERFECT English. I even have problems with American accents such as folks from Boston, Texas, etc. (I understand “Southern” as I lived there for so long!)
However, the fact that I have difficulty with accents, is MY problem. People with hearing loss should have patience with those who speak other languages as their primary language. I have heard late-deafened folks demean and criticize those who speak other languages. I always think to myself, “Really?” It is far more productive to explain that you have a hearing loss and have trouble understanding when an accent is present. Let them know that you are aware it is your problem, and pleasantly ask if they can perhaps speak slower and face you when they speak. I’ve overheard HoHearies blast people with heavy accents – as if it is THEIR fault! Always – ALWAYS – remember you are an advocate for others with hearing loss whether you signed up for it or not! If you are negative, critical and defensive, you are having a negative influence on how the rest of us are treated in the future. Yes, it can be frustrating and even embarrassing to have to ask someone with a heavy accent to repeat themselves again and again. But “own” the problem as yours – it isn’t their problem. It’s a big thing to be fluent in more than one language, so treat them with the respect they deserve.
Denise and Chloe at a dAP for HLAA-Frederick County in 2009
Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.
Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.
Why is the Word So Negative?
Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.
I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?
I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:
Be a rollercoaster tester.
Wash windows on skyscrapers.
Be a DJ
Be a judge on American Idol
Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
Tune pianos
HEAR without the assistance of my CI
So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!
I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!
I love it when I have guest writers come forward to write for Hearing Elmo. There are so many different types of disabilities, chronic illnesses, and debilitating health issues. Reading different perspectives and other individual’s stories is important. This week Hearing Elmo welcomes guest writer Kacey A., who lives in South Carolina with her husband.
Because I am such a fun and loving wife my husband recently invited to join him as he completed an assignment for his Master’s program. Secretly, I think his intent was to get me to the department store so he could beg me to buy him something! His assignment was to visit a local establishment and evaluate it for handicap accessibility. He probably wishes he would’ve left me at home. Not only because I didn’t buy him a thing, but because he forgot how much of an “out of the box” thinker I am. I had him taking more notes than he takes IN his Master’s class!
The establishment we chose was the local Belk department store. It is the only department store we have here in town, so it keeps a steady stream of business. According to some statistics I found, a staggering 24.5% of our county is listed as having a disability. So, I think it is pretty important for our businesses to be accessible to all of those who have disabilities.
But what does accessible mean? When people think of “handicap accessibility“, they usually think of people in a wheelchair. But what about those people who have a disability but don’t need a wheelchair? Some disabilities require a cane, a walker, an assistance dog, or a simple chair/bench to sit down and rest for a bit.
The first thing I noticed during this visit WAS wheelchair related. There were quite a few handicapped parking spots up close to the door, which was good. BUT…because I’ve had some experience with loading and unloading wheelchairs, I also noticed that the parking spaces were the normal size with no little yellow striped zone to allow extra space to unload a wheelchair. So, if you parked with a side-loading van lift, you’d either dump the wheelchair into the row of bushes or into a car. Hmm, not very practical.
The next thing we noticed was the little sidewalk entry for wheelchairs/walkers/strollers/carts. It was made of bricks that looked like Legos, with all those little bumps on top! It’s not easy to push a loaded wheelchair, stroller or a cart, let alone push it up an incline made of bumpy bricks. I imagine it would be the same story for someone using a cane or walker. Those bumps would just get in the way and may cause more injury. I’m not sure what these people were thinking when they put in bumpy bricks but I was feeling a little pessimistic already.
But then things started getting better. The entry way was a double automatic door, which got a “double” a thumbs up because it actually gives a person some space to get in and out! In between the two entrance doors, we spotted a courtesy wheelchair, which was another thumbs up for me. There are people I know who don’t need wheelchairs on an everyday basis, so they don’t own one, but when they get out and about, they find they need one. So a courtesy wheelchair is always a great thing to have available.
Feeling adventurous, we grabbed the wheelchair and my husband (who is also a football coach) pushed me through the aisles as if I was the football he was rushing into the end zone before someone could tackle him. I held my breath, shut my eyes and prayed quietly to keep from screaming, but when we stopped and I opened them, I realized that we made it clear across the store! To my surprise, the wheelchair actually fit down just about every aisle. There was one aisle that had a ladder in it, but it was easy to maneuver around to the other side of the ladder. Once I caught my breath, I started feeling a little more optimistic. We returned the wheelchair and headed towards the bathrooms….. where things got rough again.
Bathrooms are always difficult to “pass with flying colors” in my book. For starters, the signs usually only have braille on them about half of the time. I guess those with sight impairments don’t have to use the bathroom. Of course, I can see rather well and sometimes I have trouble figuring out if I should go in the door labeled “Blokes” or the door labeled “Sheila” at Outback. Sigh.
Anyway, moving on. Then the door itself is usually an issue too. Very rarely do you see a bathroom door that has a automatic “door open” button. I grumbled to my husband about how this should be mandatory at all facilities in order to be accessible for those with walkers, strollers and wheelchairs. He looked confused. So I had to demonstrate with my “air walker” what I really meant. It is NOT easy to push a (sometimes heavy) door, maneuver a device AND keep your balance without bumping into someone who is coming out the door. My heart is happy when I see facilities that just eliminate the door all together and have a small “maze of walls” that leads to the restrooms.
So let’s say you manage to get in the door, or get lucky to find a place that doesn’t have a door. Well, you are usually “home free” then because most places have the handicap accessible bathroom stall. However, most people never even notice that most places are missing a lowered sink. This isn’t just an issue for those in wheelchairs. Some of those sinks are REALLY high for children to get to to wash their hands too. Then you have the mom who stands and lifts each of her seven kids up to the sink to wash their hands. Or she just breaks out the hand sanitizer on the way out the door.
Sigh. Speaking of mom’s. You know how most restrooms have a baby changing area? Yeah, those are great, except for this one. It was RIGHT in the way of the door. So when it was down, no one could go through or come out. Not very convenient. But my other issue with these is that they have a weight limit. What happens when you have a large child, or even an adult who needs to be changed? I have seen ONE place that had a “Changing Counter” to allow for that.
Okay, I think you get the picture of why bathrooms never really get a thumbs up from me! We finished up and my husband was getting anxious to leave, but I wasn’t done.
As we walked through the store, I noticed that besides the shoe department, there wasn’t a single place to sit down for those who may just need to rest. Not even at the fitting rooms! Chairs are such an easy and relatively cheap fix. Considering the number of people these days with fibromyalgia or arthritis that need that short break so they can continue to enjoy their day without regretting it later, you’d think that even a small department store in a small town would have some chairs!
And finally, what may be the most important aspect of being “accessible” — the employees. Some facilities may not have everything someone needs, but friendly and helpful employees go a long way. They may be able to find a chair for someone to sit down in. Or they simply smile and repeat themselves to those who are hard of hearing. They can move things around for those in a wheelchair or a walker. They can lend a hand in opening that heavy bathroom door. They smile as a person and their assistance dog walks by rather than scoffing and yelling about a dog being in the store. Friendly employees really go a long way.
People who don’t have disabilities don’t think of accessibility issues until the issue is staring them in the face. How do we train employees to be understanding in a world that wants to criticize and condemn? How do we educate people in a world that would rather be ignorant because it is “easier”?
A disabled person’s limitations and accessibility issues usually go unnoticed because the person in the situation doesn’t have the energy or the confidence to ask (or demand) that organizations do something to help them have easier access. How many people do you know who would rather just stay home than worry about making a scene somewhere? I know far too many. How do we build confidence in those around us who have disabilities to fight for their rights?
More importantly, how do we get businesses to think about these things before the “fight”? Organizations usually do only what the ADA requires and don’t think anything else of it. While I think the establishment we visited did well compared to some other establishments in town, there is still room for improvement EVERYWHERE. But how do we push for that improvement in a day when so many organizations are looking for ways to cut costs instead of increase them?
The only answer I can come up with is this — Stand up for yourself and those around you who are disabled. If you are blessed to be without a physical impairment, start thinking about those who you know who do have impairments while you are out and about. Would they be welcomed into the store with their assistance dog? Would they be able to easily maneuver around the facility? Would they be greeted by friendly employees and treated with respect? If the answer is no, then speak up. Let someone know. There is no need to make a scene, but simply let our voice be heard…. one voice at a time.
By the way, my husband got a 100% on his paper that week. So maybe he didn’t regret taking me after all!
God has a wonderful sense of humor I believe. I’m quite certain that I make Him laugh out loud on occasion, as I can be funny even without trying. (I’m NEVER funny when I DO try!) I also imagine that He has rolled His eyes, chuckled with minor annoyance, and wished He could THUMP me on the head at times as well.
This past week I had a couple of serious discussions with my husband about church. I had a “plan” about when I would no longer be attending church.
I’m getting ahead of myself, however, so let me explain how all this began. I had begun consciously thinking about what I would no longer do once my kids were gone from home. What started all this (dangerous) thinking was my epiphany of how different fixing supper each night would be after it became “just Terry and I”. I have a “soon to be 18-year-old” son, who eats like most 18-year-old boys. He actually eats very healthy… but he eats a LOT. So while fixing supper one evening, I realized that I would go from baking six chicken breasts to baking just two chicken breasts in only a couple of years!
Well we all know how one “thing”, or one “thought”, can lead to another. Before I knew it, I realized that I was thinking about how I was going to have to explain to Terry why I wouldn’t go to church with him anymore. I hated to have that conversation, for I didn’t have a plan to stop going as a result of my losing my faith, anger at God, or a back-slidden spiritual condition. I felt badly for Terry, because he would have to go alone. And yet, it never entered my thinking that he shouldn’t be going alone. It’s as if the decision had already been made.
I really love our church, and our pastor is a phenomenal pastor/teacher. The couple of things I’ve discussed with him about people with hearing loss were always met with approval and a very genuine desire to help. Churches are exempt from the Federal law (ADA) mandating that assistance dogs be allowed to accompany their partner with a disability. Chloe has always been welcome at my church. But…
I am invisible at our church. I come in and a couple of people say “hello”. I then go to sit down, make Chloe comfortable, sing/sign with the congregation, listen attentively, pray, sit around and wait for my family to finish their “clean-up”tasks, and then we go home. I’ve actually written and then deleted a couple of paragraphs here explaining the different ministries in our church and why I can’t participate (or how I “tried” and it failed… believe me there were numerous attempts!) I’ve chosen to not add that in this post because, 1) I don’t want anyone to think I’m being critical. I feel harbor no ill feelings towards any ministry or individual, and 2) the purpose of this post is to explain God’s intervention and how He’s made it clear I cannot deliberate whether or not I should attend church.
So in order to keep this from being “novel length”, let me cut to the chase. I walked into church Sunday and went to my “spot” in order to sit invisible. God sent three different people over to me that did more than say “hello”. They asked how I was doing, what was going on in my life… He even allowed me to offer prayer and encouragement to someone needing to know that someone would honestly “pray without ceasing” for her.
I went from sitting “invisible“, to sitting “surprised”. Chloe kept looking at me funny, so for all I know my mouth was even hung ajar in shock. Yes. At times God chooses to reach down and “thump” His younguns on the head.
In preparing to write this post, I was reminded that one thing many late-deafened people have in common is the trap of a self-imposed isolation. I’ve been to conventions, conferences, and support group meetings. I’ve even spoken in workshops, research symposiums, and on Capital Hill. I should know better. Yet… I am just as much in danger of allowing myself to simply “drop out”, as someone new to hearing loss. Why?
Perhaps it’s because “all of this gets really old”. Or maybe we wonder if we are making a difference to anyone? My messed up thinking had me convinced that I go to church now because my kids care if I do. I didn’t have to twist my own arm or anything to convince myself that after THEY are gone… no one will notice ME gone.
I say all of this in order to remind all of us, that God can use anyone. He can use the deaf, the blind, and those with mobility challenges. He can use the hyperactive, the extremely shy introvert, and those who do not have “traditional” spiritual gifts or talents. In the meantime, my involvement remains at simply being able to faithfully pray. It’s very likely something I do better than most. I disconnect my cochlear implant, and instantly eliminate all background noise and distractions.
I think the late-deafened get bogged down in what they “use to be able to do”. When I could hear I was in the choir, taught 2nd grade boys Sunday School, led two women’s Bible studies, worked in the Deaf Ministry (how ironic!) and acted as a secretary for the Children’s church. I can’t let what I use to be able to do, keep me from finding joy in what I can do now. If the bulk of what I do happens to be ministries outside the church, it doesn’t mean that I should no longer go.
Don’t allow yourself to believe “church” won’t miss you. In the end, that’s not the point of “church” is it?
Hearing Elmo 
