“I have always depended on the kindness of strangers.”
Tennessee Williams, A Streetcar Named Desire
We have all been in the position where a kind word, a helpful gesture or a simple pleasantry can make all the difference in how we feel in the moment, or result in a memory that changes us for a lifetime.
No matter how strong we try to be, the actions or in-actions of others can have a profound effect in the quality of our lives.
However, the issue can often be much more significant and consequential when one has a disability that either requires or is greatly affected by the caring, thoughtfulness and patience of others in and outside our personal environments.
Based on experiences shared in our community, here are some of the most impactful in the area:
- Caregivers. A consistent and painful theme from those who require others to assist them is often the attitude of feeling like a burden, the lack of kindness and patience, or worse, the abuse that many experience.
Recently, a beautiful and talented young woman, who due to an accident was a quadriplegic, shared her experiences. She was going to college to be more independent, but lived at home and was cared for by her mother and older sister. She had part-time help that was paid for by the state, but it wasn’t full time, and often not for the holidays, where people typically want time off. She was made to feel like an inconvenience by her family for having to ask for help, and the frustration and emotional pain surrounding this interpersonal family dynamic had this woman contemplating suicide in an online forum.
Emotional and physical abuse is something we hear of often in the world of disability, and while there are sounding boards via social media groups and public forums that can be of great benefit, real resources can be sparse or difficult to obtain.
It is unfair and inhumane that in our society, those with disabilities are forced to live in prisons of abuse and emotional and spiritual suffering.
How you can help?
Take care of your own health to be as independent as possible. Diet, exercise, school, personal and spiritual development are all areas that you can control. Make a plan and find ways to reach your goals so you are not unnecessarily dependent on others physically, financially or emotionally. Get inspired by others … if there is a way out, you must first move through the circumstance. You can develop your personal strength, patience, and resilience to get you to your new reality.
Ask for help. Don’t be ashamed or embarrassed to tell someone, a professional or your peers what is going on so you can receive the support, and possible wisdom and solutions you need. Care Cure is a great resource, the Christopher Reeve Foundation and BackBones, all have forums you can post in anonymously. Do a search for groups on Facebook as well and join for support and advice.
Words of great wisdom from Sam Morris, a spiritual teacher and life coach with Zen Warrior Training, who also happens to be a wheelchair user:
“The most challenging thing a person can do is to love what is, no matter what the circumstances are. Every spiritual teacher has shared this basic wisdom. Surrendering to what is does not mean giving up. Quite the opposite. It means tapping into a previously unknown power within oneself to transcend perceived limitations”.
If you are a caregiver, take care of yourself first, so you can be more kind and patient. Resources to help caregivers can be found here: https://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm. Additionally, Care Cure from Rutgers has a caregiving forum for SCI.
Find out what triggers you to hurt those in your care, and work to discover how you can make the changes needed to improve your own emotional and physical health. If you find that you are unable to manage care without causing harm, find a way to remove yourself from that role.
- Outside Environment: As we enter the world every day, we bravely risk whether the handicapped parking space will be open, the ramps will be there and in working order, the elevator will work, the bathroom will be accessible, the doors will be manageable, the counters or tables will be low enough, the beds will be low enough, the people will be welcoming and the activity or task or we set out to achieve will be successfully completed, if not enjoyable.
Unfortunately, we know this is not often the case. Living in a world with a disability means having to encounter a never-ending set of obstacles. It can be invigorating and freeing when it all works out …. or downright dangerous and demoralizing when it doesn’t.
How you can help?
Don’t park in a handicapped parking space unless you absolutely need it. (See all the information on parking from the experts on PUSHLIving.)
Don’t use accessible bathroom stalls unless there are no others. Waiting on that bathroom stall is a common source of frustration among wheelers and one of the most shared articles we have from contributor Gina Schuh.
#DropTheHighTops: Join us in fighting the craze of high-top beds in hotels and tables in restaurants, which has made segregation real again for those who use wheelchairs.
Fight Back: If you see a violation of any kind, report it to the owner/manager, the Department of Justice, and get a lawyer if need be to address it for the next person. The entirety of Miami Beach, Fla., is now accessible and enjoyable due in large part to the American Association of People with Disabilities, who filed a lawsuit to enforce the Americans with Disabilities Act (ADA), which was ignored for years by businesses on the beach. These plaintiffs received no compensation, but took the time to file, show up at court and re-inspect locations which, one by one, were made compliant. In the end, we all benefit: the business, friends and families, and all current and future disabled patrons. Learn more about how you can make the ADA work for you in our interview with expert Luis Androuin.
Give credit when credit is due. When someone makes a difference, does something simple or remarkable to help you or someone you know with a disability, be it an airline employee, a waiter, or a stranger in the street, these everyday kindness patrons deserve recognition and appreciation.
Many feel that publicly acknowledging these acts of kindness is ableism or patronizing to those in receipt. It can be a slippery slope due to the popularity of “Inspiration Porn”, yet as a person with a disability, I am deeply touched by “the kindness of strangers” on a regular basis, because these moments are not as commonplace as one would think. Many who become disabled do lose their friends and lovers, and are left isolated and alone when they cannot do the same activities they used to.
For example, when Guinness did a commercial about a group of guys who didn’t just “move on with their lives” and leave their wheelchair using friend behind, but rather all continued to play basketball, in wheelchairs … many of us felt the sting of tears in our eyes and agreed with the ad premise that it was indeed a sign of “character”, and a level of friendship that is not something we are accustomed to or can take for granted. There seems to be a fine line between ableism and acknowledging uncommon kindness and decency that many in the disability community struggle to define.
This can lead to an over-correction to the point of admonition to such kindness when it is perceived as a lack of recognition of our abilities. “I am capable of getting the door myself thank you!” Let us not shoot the messenger in our attempt to achieve respect for our capabilities, because guess what? Next time you are stuck in your van, or in the ice or snow, or you fall out of your chair and a group of teenagers get your butt off the ground, have the humility to know we are not in reality always so equal. These people are not to be taken for granted. These are our “everyday heroes”, whether we want to admit we needed the help or not. Your reaction can be the kindness that they remember and affects their days and life experiences.
An article that shows how we cannot be too militant in our definition of “ableism” comes from author Wendy Lu in Bustle:
“Whether it’s conscious or not, ableism projects the idea that people who have disabilities are somehow lesser than able-bodied people – similar, for example, to the way sexism, whether it’s benevolent or hostile, projects the view that women are lesser than men. Everyone deserves to be treated with respect, including people with disabilities … Of course, just because you slip and say something offensive to someone with a disability doesn’t automatically make you an ableist. Even people with disabilities (including me) sometimes make these mistakes, too – not because we mean to be offensive, of course, but because our community is not homogeneous and people have different experiences depending on what disability they have. What’s important is recognizing where we went wrong and actively both remembering and wanting to do better. It’s about making sure our language is inclusive, and that our minds stay open to all different types of bodies.”
How to help? Always look for ways to spread kindness, disabled or not. Letting someone in a line on the expressway, opening a door, giving up the only low table when there are three high-tops open (this happened to me recently and made the difference between being able to stay or leave!). Be aware of your surroundings and those in it who may need a smile, or a hand up, or a push … Often people with disabilities look like they are struggling when that is just how they do things … like getting their chair in a car or picking something up off the floor. A good rule of thumb is to not assume they need help, or automatically give it, as many have great pride in their independence and don’t want to be viewed as weak. Observe, ask first and don’t make a big deal of the disability. Focus on the person, like “love those shoes” or “have you been here before” type conversations, verses “do you shop alone often?” or “boy aren’t you fast in that thing!”
Don’t take it personally.
Remember the message of this great new video about a man explaining human behavior as a “garbage truck”.
When you are not receiving the care, consideration or love you deserve at home, in personal relationships, or with strangers, remember the quote from the video, “life is 10-percent what you make it and 90-percent how you take it.”
Dr. Ilyssa Hershey gives this great advice:
“It helps greatly to change our focus from reflecting on how other people’s behavior makes us feel, to wondering why he or she acts that way. It is likely that people we experience as unloving or uncaring are carrying around a significant amount of anger and sadness themselves. The pain these people feel can spill over into their everyday interactions with others.
Changing your focus from feeling angry and hurt to wondering what hardships or difficulties could be preventing people from being kind can not only make you feel better about the situation but can result in something far greater – compassion. You realize their behavior has nothing to do with you. As Mahatma Gandhi expressed in his famous and inspiring quote, “we must be the change we wish to see in the world.”
The night of my car accident, when the doctor told my mom “you must quit your job, as your daughter will not walk or use her hands again, and she is young and beautiful and will likely be suicidal”. My mom was alone in the waiting room and couldn’t stop crying. A man, who to this day, she does not know who he was, came up and held her as she sobbed, and spent over an hour talking with her. It is poignant moments like this that make our existence in this human race worth the struggle.