RD Blog week 2019: Day 3: Disability

FInal-2019-JPGH-badge-marked-RD-not-RAI’m proud to participate in the 5th annual RD blog week.  Today is day three and the topic is:

Disability – Discuss your feelings about our position within the disabled community with variable disability. How do you deal with limitations that are present some days and not others?

Professionally, I’m a speech-language pathologist and I work with people with varying levels of disability.  My goal for my clients is to always to encourage them to never let what they “can’t do” stop them from doing what they “can do”.  It’s a lot easier saying that to someone else than actually doing it yourself.

Over the past 10 years, i’ve broken my leg once, and my foot once.  Both times, I required mobility aides like wheelchairs, crutches, scooters, etc.  It was shocking how people looked at me.  People held doors, asked if I needed help, and were just much nicer to me. There was someone who, very kindly, offered to park my car for me at work.  This person made a comment about how people looked at him funny because he would park my car in a handicapped spot (because I have a placard).  I had the placard prior to the broken bones.  What he didn’t realize is that I get looks each and every time I park in those spots.  I don’t look disabled.  I don’t walk around complaining how much pain I am in as I walk down a hallway.  I don’t scream out in pain when I can’t lift my arm up to grab something off the grocery store shelf.  My disability is invisible, but no less valid than anyone else’s.

Last week, I had two people approach me in two very different situations to tell me, ‘I don’t know how you do it.” (in regards to my work and managing swollen joints)  Honestly, I don’t know how I push through the pain daily except, I don’t have any other choice.  My doctor has mentioned the term disability a few times.  It’s clear that working more causes my symptoms to flare immensely.  I have friends who are disabled and live on disability and it is so difficult for them.  I know many people think those on disability are “fakers”, but honestly, in this country being disabled means being impoverished and poor.  The biggest fake of them all is the preconceived notion by abled people on what constitutes a disability.

My disability impacts me daily.  I can only do the best I can and take it one day at a time.  There may come a time when I can’t push through.  When that happens, I will continue to keep trying to do what I can, and learn to accept what I can’t.  Until then, I’d advocate, education, and keep living my life, warts and all.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

One thought on “RD Blog week 2019: Day 3: Disability

  1. Oh I so get your meaning Kelly !! I hate parking (actually my wife tends to park there for me) in a disabled space. When I park there I get the darnedest comments, and looks. I wish I had a comeback for the unspoken words. If only I could think of.

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