I have hesitated writing about this particular subject, but now that I am a couple years out from the event, and with my current observations, I decided it was time. An alternative title might be "Grace and Education" since that is my hope....to educate, but also to extend grace to myself and others as we learn.
I have frequently pointed out issues to my friends that I have experienced as my disability has progressed. One example would be my disdain of the step-on garbage cans in handicapped bathrooms. HOW is someone in a wheelchair (or with no balance, no legs, or whatever) supposed to step on the foot pedal and open the garbage can to toss out the paper towels??? There are dozens of things like this that I have figured out as I go. I put these items in the category of "you don't know until you know". Nobody has a reason to think through all the scenarios that could arise, nor would we be able to think of ALL the possible differences, before we plan, design, or implement an idea. But, for the one person for whom the problem exists, it is a trouble spot. I run into these dilemmas many times a day.
I have tried to remember to extend grace to others, because I do know people want to help. People have generally responded well when I point out problem areas (although most of them don't change when I visit the location again). I am not a dogmatic disability activist, but I would like to lovingly help others to think through things they don't know until they know.
One of the things I have noticed as my disability has become more visible, is the look of pity that I get. I am sure most people don't even know they are doing it, but it is obvious when you're on the receiving end. Recently, I have ventured out alone to some stores, now that I have a van and am a little more independent. Times like these are when I notice the pity look the most. People rush over to hold doors, clear aisles, and the like, all while their face (and sometimes even their mouths) say "awww, poor thing." I am stubbornly independent, but I am also in pain, and starting to have trouble with my arm and hand strength so, in many ways, I am just thankful someone opened the door, or cleared the path, so I didn't have to struggle so much. However, there are many (perhaps even the majority) of people with a disability who are strong, capable, and independent. We do not need or want your pity, even when we could use your help. If I can turn this post into a learning experience, then the first lesson is that you should ask someone if they would like help. You wouldn't rush over to a able-bodied person, and grab the door out of their hand to open it the rest of the way, so don't do it to a person with a disability.
Basically, just treat all people the same. Easy peasy! Okay, not really. Everything we do is tainted by sin. Even our best efforts to help others are mixed with wrong motives. Many times I get the "pity look" as someone opens the door for me, and it is quickly followed by this look (or sometimes an explanation to a child) that says "I am so awesome for helping the poor, crippled woman." I try not to be oversensitive, or read things into a situation that aren't there. The truth is my response is tainted by that same sin nature. This all reminds me of an article I posted on FB a few years ago about "volun-tourism". We travel to a third world country, hug some orphans, hand out water and candy, build a home, and go on safari. It was pointing out our tendency to use a missions trip as a photo op. We go back home a week later with great photos and feeling good about ourselves for "helping those poor people". I have done this too, but we quickly go right back to our American life of excess, and the other people we just thought we "helped" have not had any actual change in circumstances.
(More useful tips and disability etiquette links are listed below. In addition, I added some info about the trend in volun-tourism, since they explain the issue much better than I do. Please take a few minutes and browse some of the highlights!)
This segue brings me to the story I haven't talked about. A few years ago, my husband and I attended a camp aimed at families who have a member with special needs. In a lot of ways, we probably went there with the volun-tourism mentality. We were going to go serve the families struggling with the pressures of dealing with special needs. We learned a lot about disability etiquette there for the first time. As a person with a disability, I was overwhelmed seeing families embraced, loved, and served by many volunteers.
I wrote about my experience, and my growing pains, as God revealed ugly truths in my own heart. It was painful, and wonderful, all at the same time. This was also a week of learning to extend grace. If you know me, you know my middle name is Organization. Dealing with a dis-ability is not as hard for me as dealing with dis-organization. That old post shows how I struggled to find a spot to serve, or to help without making it about me. By the end of that week, I felt I had found my niche, and for the first time felt that I could be useful despite my disability. And then....
A year later we signed up to serve again, but we would end up never going back. Turns out that even an organization built on serving families with disability has trouble doing the one thing they talk about a lot: co-laboring. They are absolutely wonderful at making families feel loved and welcomed. Many of these families think this camp is the best week of the year, and we need more places like this! The trouble is that there is still a disconnect when it comes to the able-bodied people helping dis-abled people (or differently-abled, if you prefer).
Like any week of service or missions, we show up expecting to help and bless the less fortunate. Even if we don't want to think or talk about it, it shows in our faces, actions, words. When we went to sign back up to serve again at this camp, there were issues, many that I will not discuss publicly, but the one I will talk about is the fact that they asked me to return as a camper, not a volunteer. It was brought up that we could come as a family and be served, and relax for the week.
While this was super heartbreaking for me, because it was the one place I actually felt useful, but I don't bring this story up for that reason. I want to talk more about our tendency as humans to help others to feel good about ourselves, instead of helping people who need/want our help. It is not wrong to open a door for someone, but honestly, do you do that for everyone, or deep down do you think the person with a disability
needs you to do it? Basically, I am asking you to truthfully evaluate if you treat people the same. This requires some soul searching and brutal honesty with yourself. I would venture to say that we
all do this very thing. Whether it is physical, or intellectual, there are areas in our lives that we feel superior, even if that is not a thing we would say to someone. We have those moments of thinking we could do something faster, or figure something out better, than someone else.
What it boils down to actually, is the fact that we all need to be more aware of our motives, our sin, and remember that we all have strengths and weaknesses, but none of us wants someone else rushing over to "fix" our problem. We can come together, find a place where we can work shoulder to shoulder, utilizing each other's God-given strengths, and do so to the glory of God.
Missions and service projects are fantastic, and I am not trying to say to not do them. My point is more about really learning to co-labor, whether it is in the disabled community, or a village in Africa. Ask how or what you can do to help, and roll up your sleeves, side-by-side with the others, and work together. I
want you to serve, but I mostly want you to understand that a week at a camp may not be the best way. Only you can prayerfully decide how and where to spend your time and gifts, but be intentional and educate yourselves before you do.
I am thinking of the old saying:
Give a man a fish, and you feed him for a day. Teach a man to fish, and you feed him for a lifetime.
In order to truly do that though, you have to be willing to talk and listen. Find the areas in an individual's life where they could use your giftings, and show up. Opening a door for me at Kohl's might be just fine, but maybe what I really need is help with shopping. A meal might be great, but I may have a refrigerator full of food, and a dozen loads of dirty laundry. This type of service and love involves more. More knowledge, more love, more dying to your own interests, and looking more to the interest of others. It is not about feeling good about yourself, but about laying your life down in service to another. This all takes lots of grace, love, and forgiveness. It also takes time to educate yourselves. (Please check out some of the resources listed below)
I will finish with these words from Philippians 2:1-8:
"So if there is any encouragement in Christ, any comfort from love, any participation in the Spirit, any affection and sympathy, complete my joy by being of the same mind, having the same love, being in full accord and of one mind. Do nothing from selfish ambition or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but emptied himself, by taking the form of a servant, being born in the likeness of men. And being found in human form, he humbled himself by becoming obedient to the point of death, even death on a cross."
Until Next Time~
Shari
Resources:
Disability-
- "Interacting With People With Disabilities"
- Etiquette and Language Tips
- "Introduction to Disability Etiquette"
Volun-tourism-
- "The Reality of Voluntourism"
- "The Business of Voluntourism"
- "As Voluntourism Explodes In Popularity, Who Is It Helping The Most?"
(Please note this links are to outside resources, and all the information/views are not mine, but are provided here to educate you more on this topics.)
