This post has been a long time in coming, because I believe it relates to many aspects of life – employment, education, transportation, access to public facilities, and so on. Many of us, including me, have had to fight to get the services, access, or technology that we need to be productive classmates, employees, or members of society. This blog post has been inspired by a recent event in my own life, and I am going to be purposefully vague about it; for those who know the whole situation, please keep it to yourselves.
Advocacy is essential to people with disabilities being productive members of society. We may travel differently, use different skills, have cool gadgets that talk or vibrate, but beneath all that, we would like to not only be included but to feel included in academia, athletics, the workplace… even reality TV. Sometimes we request accommodation that would be required for such inclusion, and it’s provided with little or no fuss. Sometimes we have to fight harder for such accommodations, because to be without them would mean that we cannot be those included, productive people that we know that we are.
And other times, when the accommodation is more of a preference (even a strong preference) than a requirement… what do we do then? Do we force that reluctant and unwilling university professor to accept us in that class? Force an employer to provide additional technology above and beyond what they have already agreed to pay for? Or is the best advocacy to push back by finding our own workarounds, by taking a different course with another professor or finding alternate sources of funding for that technology? Sometimes, one action is appropriate, and at other times, the other is. On other occasions, moving on to other pursuits is essential both for logistics and for the mental energy and stress that accompany fighting for access.
I know people who believe that fighting for access to anything for everyone is important and essential. Without people like them, we wouldn’t have made the advances we have to education, public access, and the workplace. But not everyone has the strength or inclination to advocate in this way; some prefer to advocate by finding ways around the obstacles placed in our path. Unfortunately, still others take no for an answer and live as though no one will ever accept them. This fatalistic view bothers me more than anything, because it perpetuates the idea that we will go away if we get turned back. And while I believe that pushing back and demanding access is important and essential, picking our battles is even more crucial. What does it benefit anyone if we are granted access to one aspect of life for no other reason than because it’s mandated? Does it not speak more to our tenacity and courage that we find ways around those roadblocks that get placed in our way? I’m not talking about making martyrs of ourselves, but finding the way to maintain our dignity while allowing our academic institutions, workplaces, places of leisure and modes of public transportation to realize that we are human first and disabilities second.
I don’t have easy answers to any of these questions, as my own choices regarding self-advocacy would be considered too polite by some and too demanding by others. Some would tell me that finding ways around the word “no” is not my responsibility. And yet, I find that such times give me an opportunity to prove not only to others but to myself that I am stronger than the word “no”, and that I can be creative when it comes to finding solutions to access concerns. Sure, I might ask a friend for help in a pinch, or might even have to push back and demand my right to access… but until such point as I am considered a colleague, a shopper, or a student first and a blind person second, I find proving the naysayers wrong incredibly rewarding.
For those who DO fight by demands and demonstrations for reasonable access and accommodations, I thank you, because my life would not be as well-rounded without people like you and those who’ve gone before. For those who request access by proving by getting kicked down and getting back up that classes, job duties, and independent life ARE possible, even essential, I thank you because you give me the courage to go on another day. For those who decide after weeks or months or years of fighting that it’s no longer worth it, and blaze your own path, you do show remarkable courage yourself by realizing that it just isn’t worth it anymore; you are not a failure, so pick yourself up and blaze a new path for yourself. But for those of you who just take no for an answer, just because it’s hard, don’t get in my way, because in effect you are part of the problem; obstacles are placed in our path due to the ignorance and unwillingness of a public that think we should be hidden away in institutions or treated like angelic beings for getting out of bed in the morning, and laziness and apathy perpetuate this.
Perhaps I’m more of a fighter than I thought…
Life Unscripted 
I am always going to be betting on you to win any fight you’re in.
LikeLiked by 1 person
You say the nicest things sometimes 🙂 But seriously, thank you. Sometimes, looking back, it’s amazing how many fights I’ve had. Sometimes I’ve been told that I should’ve fought harder in certain situations, and sometimes I feel like I should’ve given up a long time ago. Either way, picking battles is very very important…
LikeLike
Well done! I wasn’t that smart when I was your age. Kathie
Katherine Schneider, Ph.D.
Senior Psychologist, Emerita
Counseling Service
University of Wisconsin-Eau Claire
schneiks@uwec.edu
Author of Occupying Aging: Delights, Disabilities and Daily Life, To the Left of Inspiration: Adventures in Living with Disabilities and a children’s book Your Treasure Hunt: Disabilities and Finding Your Gold
Blog: http://kathiecomments.wordpress.com
LikeLike
Kathie, thanks for stopping by. Leaving my age out of it (though it’s fairly clear what it is), I think it comes from experience. I know many people who will fight because they’ve been wronged, and rightfully so. But just because someone has been wronged doesn’t necessarily mean it’s time to pick up your sword and fight. There are battles worth fighting and those that just end up as embarrassing scrimmages.
LikeLike
I have to pick and choose my battles. After being taken advantage of by an employer and other blind people, I usually only get involved in advocacy if it involves my wife, a friend, or someone who just doesn’t have the skills to ask for the help they need.
I don’t belong to any “blindness organizations” because none of them can represent me. I’d rather help someone with their computer who asks for help instead of someone who just assumes that of course I’ll take over doing unnecessary maintenance on their computer, just because the last blind guy who was charging people but not really doing anything, has moved away.
I’ve found you can get a better response from a person or company by sending a letter in the mail instead of just an email or an online comment. Sometimes you just have to do things a bit different to get someone’s attention. Much like the time I handed a bill passed in another state to a representative of my state when they were a guest speaker in a college class I was taking.
I once had to tell the director of a state blind rehab agency to take their tuition support and stuff it after they refused to work within the suggested guidelines in the testing they had me do. In that case, I was able to get parents to split the cost of classes with me.
I’m not one who will sign a petition just because its there or people I know have signed. I have to check out both sides of the issue before just carelessly associating my name with someone’s problem.
There was recently such a petition running around in my area by blind people. It was about demanding that other local movie theatres offer described movies. There is a large chain of theatres here who has been doing that for several years, but there were people who didn’t understand why I wouldn’t sign. They didn’t understand that these small, one or two location theatres just don’t have the money for the technology that is required to do this.
So it may sound selfish that there has to be something in it for me. I’m not talking money or prizes, just there has to be something I can do to make a difference. I can’t make that brick wall move by standing in front of it and yelling, but if you’d like me to join you in a meeting with the Mayor, I’ll consider it.
LikeLiked by 1 person
This post is confusing. If you find saying no to naysayers Is rewarding, why are you asking readers who who know the whole situation to keep it to themselves?
_____
LikeLike
Fair question. Just because saying no to naysayers is personally rewarding to me doesn’t mean that the whole world can or should know about a particular situation. Several readers to this blog know about a particular situation in my life in which I have needed to advocate quietly, as rewarding as making a ton of noise would be.
LikeLike
there is a time I had to call in the disability advocates
LikeLike
Thank you for having the courage to write a thought provoking post that makes us challenge assumptions within our own community! Frankly, your post is relevant to situations faced by other minority groups. I always fear that advocacy can alienate us from society at large depending on how its done since people may erect defensive walls to protect themselves. The VI community may be in a position to harness technology and virtual employment opportunities to blaze their own path. The “old” way of doing things may not always work, and people may ignore shouting after a while. It can be very frustrating when you feel like your fighting the same battles all the time or seeing the same stereotypes on television or hearing the same resolutions to problems all the time. I’m blazing my own path and will readily acknowledge the risk involved in doing so. Your post is a blessing to me right now, and I thank you for taking the time to enlighten our community.
LikeLiked by 2 people
Rebecca, Thanks for your kind words!
There is a place for making a big noisy deal out of something, but this varies for everyone; The very loud advocates have many valuable skills, but can sometimes come across as off-putting. This isn’t because their demands are unreasonable, but, like you said, people become immune to screaming after a while.
What is it that you’re doing these days?
LikeLike
Rebecca I do like your response you already know about the senareo I used when I responded to this post so I don’t have to go into details again just thought I’d reply and say I liked your response.
LikeLike
This post is so vague. It would have been a lot more meaningful if your readers were given an example from your own experience in your own life.
LikeLike
Tim, thanks for stopping by!
I appreciate your input! I linked to several instances where I have had to advocate both noisily and quietly. The reason I didn’t go in to more detail here is simply because the type of advocacy that is most effective varies so widely depending on what remedy is being sought, who is advocating, and the reception of it. No one’s going to swat flies with a hammer, nor hammer nails with a fly-swatter. Also, the level of mental and physical exhaustion, exhilaration, and energy required for certain types of advocacy vary from person to person. I would never discount someone who reasonably believes they have faced prejudice and unreasonable refusal, and chooses to fight back. Nor would I discount a college student who struggles so much with a professor that he takes another class with a different professor.
All this being said, there is no one-size-fits-all approach to advocacy… my battle lines are drawn in different places than yours or anyone else’s.
LikeLike