Who Has a Right to Make Our Choices?

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


Embracing Freedom

Hearing Elmo welcomes Ruth Ilean Fox as guest writer for this week’s post. I was trying to remember the first time I met Ruth – most likely at a HLAA convention, but we’ve also touched base from time to time via email and now FaceBook. Ruth has always been an encouragement to me, so I was thrilled when she agreed to write for Hearing Elmo. Her reminders about embracing the freedoms we have is something we should all remember – and share.

Accommodations for disabilities equal freedom of functionality.  Yet how often, instead of embracing freedom, have we turned down accessibility options because of personal discomfort.

Everyone has challenges, some slight and some difficult, which hinder the achievement of a particular goal.  There are all sorts of tools and techniques that help to bridge these barriers to functionality.  Glasses help some vision impairments; hearing aids and cochlear implants assist some hearing losses; sign language and cued speech provide alternative communication; canes, Seeing Eye dogs provide guidance for those with limited or no sight; wheel chairs, walkers, and service dogs assist with mobility challenges.  Then there are ramps that provide building access, assistive listening devices that shorten the distance between the sound source and the listener; and captioned TV, phones, and movies enhance understanding.  This is just a tiny fraction of hundreds of forms of assistance that is available to people with challenges.  The list grows daily as new ideas are invented and accessibility laws are enforced.  Most of these things were not even in the dreams of inventors as recently as 30 years ago.  The ADA became law just over 20 years ago.  It is exciting time for people with disability; challenges are being turned from absolute barriers to varying degrees of freedom.

Usage – Not Access Provides Freedom

Access to accommodation alone doesn’t provide freedom; it has to be used.  Various situations cause people to reject available accommodations.  Many people are apprehensive of publicizing the presence of their impairments. It is possible that they don’t like the way the accommodations changes their “average person” appearance causing stares and comments from other people.  They may feel awkward with the use of an accommodation because it is new to them.  Their patience may be stressed because accommodations don’t always work the way they expect.

As a person with multi-disabilities, who doesn’t want to miss the fullness that life has to offer, I have had a lot of experience with “seeking freedom through accommodations”.    I have had the joy of watching the world develop from a time where you provide your own accommodations; develop your own accommodations; or patiently accept a significantly poorer participation in an activity where accommodations did not exist, to a world where accommodations are appearing in many places.   Accommodations are appearing as public services, insurance companies are slowly accepting accommodations as reasonable coverage options, the market place is overlapping accommodation needs with features for the average person, and manufacturers are making accommodations more attractive as well as improving their capabilities.

Still even with this greater access to accommodation, it sometimes takes nerves of steel to venture out in public the first time with a new accommodation.  My first accommodation experience was glasses at a time that “four eyes” was a favorite taunt of my eight year old peers.  I would leave them at home, losing the freedom of sight. A hearing aid was the next accommodation, with which I experienced much anxiety trying to hide it and my hearing loss, instead of embracing the new found freedom of hearing. I did a bit better with the cochlear implant, as the novelty of it was interesting to most people. Then crutches, a walker, a mobility scooter, and a wheelchair became necessary accommodations for me.  Each one of them caused extreme anxiety as I first used them in public.   Their use provided freedom of mobility, but my focus was on how different they made me and I was sure that everyone was staring at me and my disability.

Hiding and Denying a Disability Does Not Make it Go Away

The one thing I did learn from my youthful response to glasses was to be persistent.  Hiding and denying a disability never made it go away.   I have find that even if my heart double beats; my face turns red; and my hands shake and sweat, I was where I wanted to be in the community. The discomfort was fleeting and I relax in the knowledge that most people around me respond more to my smiles and communication, than all my paraphernalia.

My wish for everyone struggling with the effects of disability, regardless of its degree or kind, is to explore accommodations; patiently work through the initial anxiety; and embrace the freedom.

– Ruth Ilean Fox