Addressing social stigmas and barriers in our MS and disabled communities

By Mary Pettigrew


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“We are challenged by people who perpetuate stigmas about disability; we are challenged by people who cannot be bothered to make locations accessible; we are challenged by inadequate legislation.” 

-- Emily Ladau, disability rights activist and blogger

Each day, I navigate through life as a person with MS and as a patient advocate. Each day, I take notice of my surroundings, paying close attention as to how accessible and inclusive things are in my city. There are many areas in need of improvement and are lacking in the practices and policies necessary to accommodate the needs of our society as a whole – for people with and without disabilities. The more we advocate for change, the better chance to create a society where all people can participate more fully. But, before we can remove the barriers and social stigmas throughout our communities, we must first identify what they are. I will touch on just a few of these issues in this article. 

Language

Most people probably don’t realize the hidden ableism behind the euphemisms. There are several inappropriate euphemisms which continue to be used in our world. Terms like handicapped, challenged, and special needs tend to bother me the most. Most people simply don’t know any better and mean no harm, but that doesn’t make it acceptable. Good intentions or not, words, labels, euphemisms and actions can be disempowering, patronizing, and even hurtful. 

It’s likely I have used these terms at a time before my own diagnosis, but 20 years later, I know differently. I am a person living with MS. I do believe people have the right to refer to themselves in the ways they feel most comfortable as long as they don’t push it onto others. I am a person living with MS.

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To explore the full etymology of the word handicap, go here.


Body language can speak just as loud as words sometimes. When people look at those of us with disabilities differently, we notice. Thus, making it all the more difficult for us to feel comfortable in our environment. I’ve seen people speaking about individuals with disabilities as if they don’t exist, even though they’re right there and can hear every word. Others think they are being kind in their interactions, some even patting the shoulder of people in wheelchairs or speaking to them in child-like tones. This behavior is more destructive than helpful and the nondisabled population needs to understand.

Speak up for yourself and for others because the more we can do to educate society, the more opportunity for change. Also, learn to use People First Language. If you are a “disabled person” or a “person living with MS,” then tell people that’s what you wish to be called if the situation calls for clarity.

Disabled parking placards

No matter if your symptoms are invisible or visible, your doctor might determine you need to use a disabled placard and will provide the necessary forms to acquire one. Too often I’ll see conversations on social media about the negative experiences people have had when using their placard. Some are faced with scowls, verbal confrontations, followed into stores, find cruel notes on cars, or even had the police called on them. This is beyond unacceptable and is one of the most upsetting examples of judgement and stigma towards people with MS. If not handled swiftly and effectively, our mental health becomes vulnerable to anxietyfear, agoraphobia, and the Worsening of other MS symptoms. It’s important for us as humans to get out. We all need mental stimulation and socialization, so it’s critical we not take this basic need away from ourselves.

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Friday, 03 April 2020

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