And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

Wheelchair Etiquette

I realize that I have been going out into the world automatically expecting people to know how to interact with someone who uses a wheelchair, and yet thinking back on my own educational experiences I recognized that these skills are never really taught to us in our society. I have the advantage of having worked with amazing children with special needs, and having been a vocal advocate for all individuals with disabilities, so even before I ended up with my butt sitting in the wheelchair I was fairly conscious of at least some of the basic issues. Being the one sitting in that seat has been quite an education for me, however, and I would like to share my wisdom. I should warn you that some of it may be shared with my usual sarcasm and dark humor, because this is me and sometimes the truth hurts, but it hurts less with a good laugh.

Ms. Emily Hell On Wheels Guide to Interacting With People on Wheels'

1. My IQ did not become cut in half the moment I sat down in my wheelchair. Please do not speak to me as if I am completely unable to follow a basic conversation. And for the sake of everything sacred and holy enough with the baby talk - that high pitched voice and overly false excited tone that even toddlers hate is just rude. In other terms, "Excuse me, but does this wheelchair make my brain look small?"

2. I'm in a wheelchair, not hearing impaired. There is no need to yell when you talk to me, unless it somehow makes you feel better to look really ridiculous.

3. I'm down here. Talk to me, not to whomever I happen to be with. It is unquestionably rude to ask the person I am with questions about me when I am sitting right there as if I can not hear you because I am a foot or two below your eye level. Remember, I am at the perfect height to ram into your legs "accidentally".

4. Think before you open your mouth. A brief list of comments I am so tired of hearing is as follows:
* Oh, did somebody forget you? (Yes, just like you forget a purse someone forgot a 28 year old in a wheelchair on the sidewalk. Ugh! I hear this one when I am waiting for the bus "without adult supervision")
*Who is here with you? (Gasp! I can go places all by myself without adult supervision - they do let us out once in a while!)
* You sure drive that well. (Why thanks, you sure manage walking with those legs well too!)
* Oh you poor thing... (Save the pity unless you are making a cash donation)
*Why do your feet point the wrong way?/Why are you so knock kneed and pigeon toed? (I don't mind questions about my disability, but tact people! I usually answer that I am studying ballet.)

5. Ask before pushing my wheelchair, even if it looks like I am having a hard time. Having someone suddenly start pushing your chair is very much like having someone suddenly pick you up and start carrying you somewhere. I don't like being pushed around.

6. Please ask questions, and ask instead of staring. Allow kids to ask questions. Education is always better than fear or ignorance or stereotypes. I promise I don't bite...much. :)

7. If you see me struggling with a door that is not wheelchair accessible, would it kill you to open the door? Karma people, Karma!

8. Remember that while I may use a wheelchair, I am still a 28 year old woman with dreams and wishes, thoughts and opinions, wisdom and insight, worth and value, and desires and hopes. I just happen to access the world by using wheels. Most of all, remember that in a heartbeat you could be me and how would you want to be treated.

I was thinking that you could print this post out on a card and then when met with people who just don't get it... give them this card, and hope that they can read!

Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."

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Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst

Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies

* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.

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