Ableism : Living with "Rare"

 Living with "Rare"

A blog devoted to navigating and analyzing life with 
Rare and Complex Disorders.


by RNE submissions on 08/02/17

Written by,

Joanna Mechlinski

Despite all the bad things in the world that we hear about each day, one thing still seems pretty clear. Most individual people truly do want to say and do the right things. However, even with the best of intentions, it’s far too easy to hurt someone’s feelings, often without realizing it.

Ableism is discrimination or prejudice toward people with physical, mental or developmental disabilities. It can take more obvious forms, such as an employer not wanting to hire a qualified person simply because of a chronic illness or disability. But in many cases, ableism is very subtle, especially in speech. Many words are such an ingrained part of our language that we never even think about what they truly imply. Chances are, the person making a comment has no idea that what they’re saying is hurtful.

Certainly, by 2017, most people understand why they shouldn’t use the word “retarded” or “cripple”. But how many demonstrate the same caution with “crazy” or “insane”? Those two words are often tossed around to describe someone acting in a way the speaker finds unusual. Yet to a listener with mental illness, they might be extremely demeaning. The same holds true for words such as “spaz” (belittling a person with spastic limbs) or “lame” (making light of a person with mobility issues).

Other terms refer to stereotypes or reflect attitudes that may not necessarily be true. For example, in the past it was often said that a person was “wheelchair bound.” But as individuals who use wheelchairs tend to view them as a means of independence, not confinement, it is considered better to say “uses a wheelchair.”

There are some who are reading this and inwardly sighing, wondering what the big deal is. It’s only words, right? Why are people being so sensitive? But as we’ve all experienced at some point in our lives, words do carry enormous power. A physical assault will fade within days or weeks; but those on the receiving end of a callous remark may feel its pain years later. Why risk hurting another person unnecessarily? Language is  so rich and constantly evolving! There are a myriad of words to be used in any given situation. If there’s any question at all, just substitute another word.

Most importantly, remember that we are all individuals. Where one person takes offense or express a specific preference, another may not mind either way.  If you have any doubts about what is appropriate or acceptable, just ask! Most people will appreciate the inquiry, as it highlights a genuine concern about the individual and a desire to make things right.

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A lifelong Connecticut resident, Joanna Mechlinski is a former newspaper reporter who now works in education. She was diagnosed with lupus, fibromyalgia and polymyositis in her early twenties. In addition to helping spread rare and chronic illness awareness, Joanna is also passionate about animal advocacy, reading, writing, and road trips.

 Mary-Frances Garber is a licensed genetic counselor, providing supportive counseling for families in search of a diagnosis, a listening ear for those receiving a new diagnosis and decision-making counseling for individuals or couples facing choices regarding having another child . She also is available for bereavement counseling. Patients are seen in a private office setting in Needham, Massachusetts.
Listening, Reflecting, HealingSupportive Genetic Counseling 
Find more info here.
Meet our blog writers!
Jenna Anne
  I write to you as a wife and mother of 4 children. Three daughters and a medically complex son. I live in New England and have a love of fiber arts, music, and most importantly advocating for my children. My background is in Early Childhood Education and Music Education, I have no medical background aside from what I have had to learn on this medical journey. My writing is not statistic based, it’s not guidelines or resources but rather I bring a perspective from the human experience. Often in this world of medical complexity we focus specifically on the patient and the diagnosis and treatments, my writings offer the community a different perspective on how the day to day events are affected by medical interventions. The impact it has on siblings and family. The perseverance it takes to keep a wholesome family continuously adapting and thriving amidst all the challenges of medical complexity. My writings are often raw and unapologetic and speak to the human experience behind the policy, coding and diagnostics of modern medicine.  

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