Category: access

Shot Down as a Volunteer

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One of the big motivators to “finish” while working on my Ph.D., was simply knowing I would again have time in my schedule to do some volunteer work. I suppose it makes sense that many people believe that folks with disabilities or chronic illness are unable to participate in volunteering, community service, and areas of ministry. It has been my experience (27+ years) that people with disability seem to know their limits better than people who are able-bodied. This isn’t always true, obviously, since many of us who identify this way HAVE signed up to do more than we are physically, emotionally, or mentally, able to do. I have, however, met more people who know their limits within the disability population, than those who are able-bodied and habitually over-extend themselves.

Imagine my disappointment and surprise when numerous pleas to allow me to be involved in “extra curricular life” activities, were shot down again and again! I tried very hard to put myself in the “shoes” of the decision-makers and could see perhaps how they might think I have limitations that may interfere with my ability to be “on time and available”. I know it has been nearly five years since I was really able to immerse myself into various community roles as a result of the time and energy required to finish my degree. Maybe it has been an “out of sight/out of mind” reaction?

Regardless, I spent a couple of miserable weeks trying to figure out why I continued to be ignored by the decision-makers in places where volunteer teachers, trainers, and workers were needed. I decided to nix that miserable feeling and look for “other” and perhaps “new” areas to spend some of my non-work hours.

I’m so glad I did.

I am gearing up to initiate on an-campus chapter of Active Minds at the community college where I work. I am very excited about it and believe students will benefit from having a chapter and student group on campus. It will take a good number of months to generate the student body support needed, but I am willing to work hard to see it happen. I would have never LOOKED for something new like this if I had not found other doors closed to me.

Can Do Attitude

Ms. Amado at the University of Minnesota explains that people with disabilities can and should seek to volunteer in their communities as they receive the same benefits other able-bodied volunteers receive. Social inclusion (community membership and friendship), contribution (happiness and satisfaction), developing marketable skills and job opportunities, networking, and status/reputation, are all benefits volunteers receive (Amado, 2001, p. 28). So why do people with disability often struggle to find volunteer opportunities?

Sue Bott, director with Disability Rights of the UK, believes some of the barriers to volunteering are false assumptions. “Rather than thinking about what they can offer, organizations tend to imagine some of the perceived problems having disabled volunteers will cause them” (Hudson, 2013). Rak and Spencer (2016) encourage organizations seeking volunteers to improve the representation of people with disabilities. “Educate stakeholders about the benefits of volunteering and being part of civic, and other community based groups in improving the quality of life of persons with disabilities” (Rak & Spencer, 2016, p. 1705).

This all sounds great, right? Unfortunately, there are very real barriers to people with disabilities even if they find an opportunity to be involved. Transportation can be a significant issue, as can weather-related mobility barriers. One area of need and “very accessible” opportunities, includes mentorship. The disability community has taken very real and positive steps FORWARD, as the result of mentors making a difference. The American Association of People with Disabilities explains the importance of mentors with disabilities:

  • The influence of mentors. Although the family was the most commonly cited influence on employment for the participants, professionals such as college professors, service providers, and employed individuals with disabilities, including benefits planners and community leaders, were also commonly mentioned.
  • The power of mentors with disabilities. The participants in this study were driven to be self-sufficient through the influence, motivation and modeling of other successful people who have disabilities. The mentoring relationship took many forms, from one of general exposure to people with similar disabilities, to a support group, to a close individual friendship. Regardless of the form of mentoring, the effect on the participants was cited as a major factor in their successful transition to work.
  • Support of peers. Many of the participants attributed their drive and success to the mentors they had in their lives. In some cases, peer mentoring occurred in the form of a support group of individuals with similar disabilities.

I know mentors with disabilities that spend numerous hours online, making a difference in the lives of others by being a mentor, coach, or advocate. There are numerous ways to be involved. Even “blogging” is a significant area of service and support. Many mentors with disabilities started out by simply writing about their struggles, successes, and life as a person with disability.

Has a door of opportunity been closed to you? Look around. I guarantee that other open doors are there. We simply have to find them, and walk through! Good luck!

Amado, A. (2001). Impact: University of Minnesota. Retrieved July 30, 2018, from https://ici.umn.edu/products/impact/142/over3.html

Hudson, S. (2013). The Guardian: Is it too difficult for people with disabilities to find volunteering roles? Retrieved July 27, 2018, from https://www.theguardian.com/voluntary-sector-network/2013/aug/14/disabilities-difficult-volunteering-roles

Rak, E. C. & Spencer, L. (2016). Community participation of persons with disabilities: volunteering, donations and involvement in groups and organizations. Disability Rehabilitation, 38(17). doi: 10.3109/09638288.2015.1107643

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

New Twist on an Old Fable

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Townsend version of Aesop’s Fable: The Crow and the Pitcher

A crow perishing with thirst saw a pitcher, and hoping to find water, flew to it with delight. When he reached it, he discovered to his grief that it contained so little water that he could not possibly get at it. He tried everything he could think of to reach the water, but all his efforts were in vain. At last he collected as many stones as he could carry and dropped them one by one with his beak into the pitcher, until he brought the water within his reach and thus saved his life.

Moral: Necessity is the mother of invention.

I have the privilege of hanging out with numerous people with disability. Some are students, some are colleagues I work with at Anne Arundel Community College, and some are individuals I know from various community advocacy groups. One thing I have learned about people with disabilities,

“Where there’s a will… there’s a way”

This “will” is what this Aesop’s fable of the Crow and the Pitcher reminds me of as I have seen time and time again, people with disabilities finding a way to accomplish what they need to do with whatever means available to them and within their own power.

I was walking towards an “accessible” bathroom with a young woman who self-identified as a “little person”. I normally have a rolling briefcase trailing from my right hand and a service dog in heel with the leash in my left-hand. As we approached the bathroom, I readied myself to  disengage myself from my rolling briefcase and pull the bathroom door open. Before I could do so, the student yanked one of her textbooks out of her book bag, stepped up on it, and pulled the door open. She held it open for me and never missed a beat… continuing to talk about what we were discussing on the way to the women’s bathroom.

I, myself, do things that I have simply learned which allow me to be independent. However, this example stuck with me a long time. The young woman was accustomed to doing this and obviously had practice. The young woman’s “normal” reaction was an expectation to do something NEW and NECESSARY to accommodate her need.

Another example: One day on campus as I was preparing for class, a student whom I have met only in the hallway a few times after exchanging a cheerful greeting, poked her head in the door and waved at me. This student uses a wheelchair. I walked over and realized the issue before she even opened her mouth. Right outside this classroom is a CRAZY women’s bathroom that has an entrance that is impossible for any person with mobility issues to get in and out of without assistance.

“Need me to get the door?” I asked.

“Yup!” – “Thanks!” she whispered with a knowing grin.

Later that week I saw her in the hallway again. This time instead of only a cheerful greeting in passing, she stopped me and told me thank you again. Even though the other bathroom on the third floor where we were was more accessible, it was much further from her class and she lacked the time necessary to go down that far to avoid being late for class. I explained to her that I had to have help with this particular door too if I had my service dog with me. We both giggled at how ridiculous it was that we required assistance for that bathroom. (Do you know I still don’t know her name? Comrade in arms, but clueless as to who she is – smile). The day I got the door for HER, my service dog was waiting patiently behind me in the classroom so I was able to assist without any hoopla or drama.

Just in case you are not a long-time reader of Hearing Elmo, I have Meniere’s disease (a vestibular disorder) and “hear again” with a cochlear implant. I also have post-concussive syndrome. I have made numerous adjustments and changes within my home, car, and office to eliminate my need for assistance. Since I can’t raise my hands over my head without swooning, everything I need in the kitchen is on a shelf I can reach safely. My shower has everything I need eye level instead of up higher on the rock-faced shower wall. I have chair-rail molding all over the house so that I can grab it with my fingers if I am walking and get wobbly. All my appliances and drawers that “stick” have a tug on them so that Milo (my service dog) can open them for me. I could go on and on, but I don’t want you to miss that the reality of ANYONE with disability or chronic illnesses, is that they are accustomed to doing whatever it takes to be as independent as possible.

Please Keep in Mind

Will you do your best to remember one thing? If a person with disability, chronic illness, or invisible condition asks you for assistance, you are their LAST resort. They have thought of and planned for everything that they can to be as independent as possible. However, there are times that we just need help.

Don’t make a big deal about helping, just do it calmly and with grace.

Don’t discuss the details or “unfairness” of the person needing your assistance unless THEY want to discuss it.

Don’t feel sorry for us.

Don’t be super dramatic and bring attention to the issue.

Where There’s a Will, There’s a Way

Earlier I stated, “where there’s a will, there’s a way”. If you live with disability, chronic illness, or visible/invisible conditions, I understand when WILL disintegrates. I work as hard as the next person with disability to be independent and strong. Yet… there are times I just throw up my hands and yell, “SCREW this! I give up!”

I cannot speak for others because we are all SO different. Even people who share the same diagnosis may:

  1. Have different symptoms
  2. Take different medications
  3. Have different responses/side effects to those medications
  4. Have more support than you do
  5. Have less support than you do
  6. Have a different personality style and traits
  7. Have a different developmental history than you do
  8. Have different faith practices than you
  9. Have different co-morbid diagnoses (Other conditions in addition to their primary challenge)
  10. Have cognitive issues as well that impact problem-solving

I can say that for ME, the best thing I can do after having a “Screw this” kind of day, is to go to bed. And yup… I mean I do so even if it is only 5 PM! I always feel better, have a clearer head, and a renewed WILL after getting some rest.

I am really tired of being TIRED after having to find and produce my own accommodations for various activities. However, a fresh perspective (after a good night’s rest) nearly always renews my inner warrior and allows me to face a new day willing to do whatever I need to in order to be a thriving, surviving disability advocate.

In the comments, I welcome other examples of how you have learned to make things accessible for you.

Warm hugs and virtual “high 5’s” to my fellow differently-abled people!

© Personal Hearing Loss Journal

Denise Portis, Ph.D.

When You Want to Smack ‘Em With Your Cane

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handicapped-restroom

When you are differently-abled, going to the bathroom can be a pain in the… well?

… BUTT.

If you are partnered with a service dog, it can make the process even trickier until you get a nice routine down. Likely, one of the biggest issues for all of us is ACCESS.

In the United States, public restrooms are required to be handicap accessible. For restrooms that have multiple stalls, the number of required handicap accessible stalls depends on the total number of stalls in that location. All must have at least one, according to the ADA.

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Milo, my current service dog from Fidos For Freedom, Inc., is a very big boy. A German sheprador, Milo is 80 lbs. of helpful tail wags. Between my wobbles, cane, and big boy helper, I require some room to use the bathroom safely. I will be honest with you, I use to get aggravated if waiting for a handicap stall, only for the person to exit and they looked perfectly fine to ME.

A student leader in the Anne Arundel Community College‘s SODA club (Students Out to Destroy Assumptions), reminded me during a particular scathing belly-ache rant, that not all disabilities are visible. I think it is great when student leaders can challenge long-time advocates, don’t you? Kudos.

So yesterday, I stopped in at the women’s bathroom prior to my Diversity Institute workshop, to find the bathroom empty with the exception of…

… yeah, you guessed it,

the handicap stall. I stood there (with legs crossed) and waited for the person to exit. I even took out my phone to appear less desperate. Milo’s ears perked up (indicating a toilet was being flushed), and I stepped to the side about a foot so that the person could exit safely. I didn’t bat an eye when the person who came out “appeared perfectly abled”. It is no longer my default judgment to assume the person didn’t need the larger size, rails, and access to the stall.

I was surprised, then, when the young woman, said, “Oh gosh. Sorry, I use this so I have more room for my book bag and didn’t think someone who actually needed it would be waiting!”

I’m pretty sure my mouth dropped open.

I counted to ten and purposefully and deliberately maintained the position of my cane on the floor where it belonged, and said, “Yeah, there’s always a chance someone will need it who is waiting for the accessible stall!” I smiled (honestly! I did!) and scooted around her with Milo, closed and locked the door.

I was so mad I couldn’t pee. (Just bein’ honest folks!)

I have never had proof staring me in the face before. 24 hours later I am still processing it. My new default is a good one though. We cannot judge who uses a handicap stall even if there are other stalls empty.

Before you assume, remember:

  1. The handicap stall might be the only one empty when they came into the bathroom.
  2. Perhaps the other toilets are “nasty” or out of order.
  3. Perhaps it is a parent with a small child to assist.
  4. The person may have a genuine need for the stall. Some common invisible disabilities include:                                                                                                                  A) Anxiety disorders (especially phobias such as mysophobia, claustrophobia, and OCD) 

    B) Early stages of progressive diseases (MS, Rheumatoid arthritis, Parkinson’s, cancer, etc.)

    C) Digestive disorders (IBS, Colitis, etc.)

         D) Pain disorders (Fibromyalgia, Mitochondrial, and joint diseases)

         E) Chronic fatigue and related illnesses

F) Age related conditions

So… put the cane down; no clobbering innocent folks relieving their own needs.

BUTT… But —

For those of you who use the handicap stall even when there are others available and you prefer “more space”,

well… shame on you.

That wasn’t nearly as satisfying as busting someone up ‘side the head. I remind myself that I can be an unfeeling jerk and clueless twit about things I don’t understand. If we all learn to put ourselves in someone else’s shoes, the world would be more respectful and kind.

Denise Portis

©2017 Personal Hearing Loss Journal

How the Church Can Welcome the Differently-Abled

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My husband, Terry and I, standing outside our church on Easter 2015.
My husband, Terry and I, standing outside our church on Easter 2015.

After a great deal of thought and preparation, I decided to reach out and ask for help.

Ok. Really I’m BEGGING.

(Well that sounds sappy and depressing).

I’ll pay you MONEY. I’ll have your BABY. I’ll CLEAN your house. I’ll OWE YOU. I’ll toot YOUR HORN (but I warn you… I’m deaf). I’ll GIVE YOU PROPS. 

Hmmm. None of those are doing it for me.

I’m asking you to HELP. You CAN MAKE A DIFFERENCE.

Asking For Guest Authors

As a person of faith, and a person who is differently-abled, being able to attend my home church is important to me. My church does a lot of things right. My church could do some things better. I have learned to accept that some things are just HARD when you put everything that encapsulates ME in the place I have CHOSEN to worship.

However, I am a person with hearing loss, hearing again through the bionics of a cochlear implant. That’s pretty specific.

I am a person with Meniere’s disease, a balance disorder that the “experts” have not completely figured out yet. The triggers, symptoms, and treatments vary. How it affects me is very specific.

I have major depressive disorder. Many people do.

I have a service dog. Not everyone who is “differently-abled” has chosen to partner with one. You may have other assistive devices or options.

I know, however, that there are many, MANY people out there who struggle in their own PLACE of worship. There are people who struggle worshiping along side of the PEOPLE with whom they have chosen to worship. These people are different than “my church family people”. There are people out there who have passion for Purple. (Sorry… I got carried away with having a third point that started with P. Did I mention I also have OCD tendencies?)

I would like to ask for YOUR help. You see? I need your stories and your words. Together, the compilation of our experiences (I believe) can make a difference in our churches. I am launching an initiative that I hope will take MONTHS to complete. There is no hurry. The posts do not have to be consecutive.

You can write anonymously.

You can write unedited.

I need you. I believe those trying to improve accommodations and accessibility in places of worship need to hear your story. Would you be willing to participate?

Some ground rules:

1. Email me at denise.portis@gmail for suggestions as far as photographs, word count, etc.

– OR – Click this link: <ThIs HeRe LiNk>  (When you are a transplanted Southerner, it shows up even in your hyperlinks).

2. The story needs to be YOUR story. In other words, you live a life as a differently-abled person. Or, you LOVE a differently-abled person and because of your relationship have an important voice about this topic.

3. My assumption is the posts will trickle in over the course of months (maybe a year! I can HOPE!). I will tag them with “Churches and Disabilities”.

Do you have an invisible illness and struggle with accessibility, acceptance, and inclusion?

Are you differently-abled, and wish some minor (or major) changes could be made to make it easier for you to attend your church?

Do you have a mental illness or diagnosis that is misunderstood and has the kind of stigma that a church pretends doesn’t exist?

Do you long for support groups hosted by area churches for:

Grief Support

Addictions

disAbility Awareness

Parents of Differently-abled Children

“Single Again” Care

Why not consider writing about it?

It doesn’t matter if you have never written for a blog before. You don’t have to consider yourself a “writer”. Hearing Elmo needs YOUR STORIES. I truly believe it will make a difference.

Denise Portis

©2015 Personal Hearing Loss Journal

Hearing Loops Come to Oshkosh

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Juliette Sterkens
Juliette Sterkens

Hearing Elmo welcomes guest author, Juliette Sterkens. Juliette Sterkens, AuD is a Wisconsin audiologist with 30+ years of experience in the field of audiology and hearing instrument fittings.  Dr. Sterkens is currently on a sabbatical from her audiology practice to speak around the country to consumers and hearing care professionals on the use of hearing loops in behalf of the Hearing Loss Association of America.  Her efforts have leveraged nearly 300 hearing loop installations in the Fox Valley and Wisconsin and many more beyond. She is the creator of the www.loopwisconsin.com website and her blog at http://loopwisconsin.wordpress.com .  She has received the Wisconsin Audiologist of the Year, the American Academy of Audiology Presidential Award and the Humanitarian of the Year Award from Arizona School of Health Sciences for her work on a local, state and national level.

Chris Prust of Oshkosh is one of 36 million Americans with a significant hearing loss.  Although she wears a hearing aid and a cochlear implant, it is still difficult for her to clearly hear and understand amplified speech in churches, auditoriums, or meeting rooms.  As a member of the Algoma Boulevard United Methodist Church in Oshkosh, she was delighted at the results the first Sunday the church turned on its new hearing loop system.  “I’m home now and can’t stop smiling.  The system went way beyond meeting my expectations.   I was in awe.  I thought I would never again be able to experience a church service where I could hear every world and be able to follow along with the music knowing I was singing the correct and note and verse,” Chris said.

A hearing loop takes a signal from a sound source — a television or a public-address system, for example — and transmits it through an amplifier to a wire that surrounds (“loops”) the audience. That wire sends a magnetic signal to a person’s hearing aid, which has a telecoil, a type of sensor. The hearing aid wearer then gets a direct, clear signal, one without interference from reverberation and crowd noise.

Hearing loops are most commonly found in auditoriums, concert halls, places of worship and lecture halls but  new applications make it useful for ticket booths, taxis, tour buses, service desks and airport gates. While public installations require a trained installer, a TV or computer can be self-installed by a handy individual. Hearing loops have been in widespread use in public venues in England and the Scandinavian countries for some time, and are now starting to catch on in the United States. (See www.hearingloop.org)

Jim and Vicki Denzin, parents of three daughters, two of whom use hearing aids, are grateful that St Raphael Catholic Church in Oshkosh has installed a hearing loop. “Our girls are now able to understand Fr. Doug so much better” they commented. So pleased were they with the hearing loop technology they also installed a system in their Neenah home. Jim commented installation only took an hour and was not hard to do. Vicki reports her girls love using the loop in the TV room but is also quick to point out that it makes it easier for the girls to ignore their mother when they are watching TV. The loop has one other downside Vicki laughs, “The loop broadcasts to other areas of the house including the upstairs which meant we quickly learned to turn the loop amplifier off when it is bedtime, otherwise they pick up the TV’s audio while in their bedrooms!”

Hearing loops make public facilities accessible for people with hearing loss and brings them in compliance with the Americans with Disabilities Act. In the Fox Valley many libraries, nearly a hundred large churches, the Fox Cities Performing Arts Center, the Oshkosh Convention Center, funeral homes, the Grand Opera House and several retirement communities and senior centers all have taken the initiative to install hearing loops to better serve people with hearing loss.  A list of loops of loops around the country  can be found at www.aldlocator.com

“It is not because the sound is not loud enough, that people who have hearing loss complain that they can’t hear” said audiologist Dr. Juliette Sterkens, an Oshkosh audiologist at Fox Valley Hearing Center, who is on a sabbatical from her practice to
serve as the Hearing Loss Association of America’s hearing loop advocate, “it is because the reverberation and background noise in large rooms and churches make understanding very difficult for persons who use hearing aids. A hearing loop helps to overcome this problem”

Sterkens started a Hearing Loop Initiative in early 2009, similar to an initiative in Michigan (see www.loopwisconsin.info) and today nearly 300 hearing loops can be found around the state.  Sterkens continued “Hearing loops can profoundly affect people who use hearing aids.  When Chris Prust told me that the day the hearing loop was turned on at her church, was one of the most memorable moments in her life because it made her feel “normal’, we both cried a few tears.”

– Juliette Sterkens, AuD

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Who Has a Right to Make Our Choices?

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Ruth Fox and husband
Ruth Fox and husband

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.

Ruth Ilean Fox

—————

Denise Portis, Hearing Elmo