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-- 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.

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 anxiety, fear, 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.

MS Focus has great bumper stickers which has their logo and says “Not all disabilities are visible.” I have one and it helps make me feel a bit more comfortable when using my placard. Contact the MS Foundation if you’d like to get some stickers for yourselves. 

Also, you can report nondisabled violators using accessible parking spots by contacting Parking Mobility. You can reach them either by phone, email or download the app to report with images. 

Mobility devices

Many people are uncomfortable using mobility devices such as carts, scooters, and wheelchairs, especially the ones made available for use in grocery stores, shopping malls, traveling, and family outings. They fear odd looks and silent judgement from onlookers, so they choose to risk their safety and do without. If you’re predisposed to tripping or other problematic issues, you might decide to dismiss the burden of stigma and put your safety first. Use the tools and devices made available for you to navigate successfully. 

Voting 

Many factors contribute to voting problems amongst the chronic illness and disabled communities. Voter ID laws, inaccessible facilities, difficulties finding election materials, and untrained poll workers who lack the skills, knowledge, and information to better assist voters with disabilities. 

“For the People Act” was introduced and passed by the U.S. House of Representatives in March 2019, but has not yet been passed by the U.S. Senate. Benefits to the disabled community could greatly improve the voting rights of many, making the experience more satisfying and fulfilling as a citizen. Grants have been proposed to help pay for improvements in polling places, access, voting machines and poll worker training and staff dedicated to facilitate long lines and voting assistance in general.

Census

Believe it or not, many people with disabilities aren’t counted in census reports – this is a problem! If people with disabilities are not counted in the 2020 census, then the needs, priorities, and the rights of so many won’t count either. There is an online action sponsored by Rooted in Rights to raise awareness of this, so if you want to make your voices heard, go to their website or social media pages, watch their video and sign a pledge for #DisabilityCounts2020.

Urban accessibility

If you’ve never had to rely on a cane, wheelchair, or other device, then you might not be as cognizant of the obstacles which can hinder movement from place to place around our towns, cities, and elsewhere. The same can be said for using public bathrooms, counter height, ATM machines, and restaurants. People often take for granted the condition of curbs, steps, doorways, uneven sidewalks, public transportation, and other things when we are out and about. However, for those who need to use mobility devices, these issues are top priority. When you cannot access the things you need or desire, your quality of life is diminished.

Jason DaSilva is an Emmy Award-winning filmmaker from New York. Several years after he was diagnosed with PPMS, he recognized the need to raise awareness for better accessibility in order to navigate day-to-day. So, in 2012, Jason founded AXS Map, powered by Google Maps. AXS Map will soon be available to download as an app, in the meantime it can be utilized via computer, smart phones. It allows any member of the public to use the tool to report experiences and ratings. For more information go to www.axslab.org

Lastly, we must advocate for ourselves and for others. Don’t turn away or dismiss the stigmas and barriers we all face in our MS and disabled communities. Don’t complain in silence, speak up whenever possible for the sake of bringing about change.