What is Charity and Love?
October 12th, 2010 | 
Author: 
In the last twenty-four hours two bloggers have written about wanting to do something for the greater good of people with disabilities. Johnny B. Truant, Mr. Awesome, launched his “badass project” for good guys (click here) and Daniel Boshea, a mystery writer (click here) and parent of two kids with the labels of ASD.
I’m not sure how I feel about this.
Wait! You are wondering how I can be an advocate for people with disabilities and not just jump up and down when two caring people are trying to raise funds for people with disabilities?
Let’s just say, “It’s complicated.”
My first fundraiser was when Tommy was an infant, Aaron was 20 months old and still not sleeping through the night. Two hours a day, I would drive them across town to Stepping Stones Center for the Handicapped. Perfect time for me to volunteer to lead the fundraiser, eh?
What pushed me into action was there were about 30 babies in the Stepping Stones program and no teacher. Sure there were amazing volunteers. But these children, who needed so much help, did not have a qualified teacher. I found that unacceptable. I could sleep in a couple years.
Community Fundraisers
The local shopping center was having their annual charity craft show. At the organizational meeting, I gave my impassioned speech, we were chosen the “designated charity” and then for the next month all the parents, grandparents, friends and neighbors of the “Tiny Tots Program” spent our free time making items for our booth. We raised about $3,000 which was then matched by the organization and an official “teacher” was hired.
Special Fundraisers
After that there were the fundraisers for The Mother’s of Special Children and the Arc (formerly known as the Association for Retarded Children), and TASH (formerly known as The Association for People with Severe Handicaps) and on and on.
I met other mothers (mostly) and we had many good times, but I started asking why we had to have charity drives to fund important services other children in the community took for granted.
Regular Inclusive Fundraisers
After our court case and Aaron was finally allowed to go to public school, I got involved in the regular school PTO fundraisers. There were spaghetti dinners, White Elephant sales, Dances, Raffles, Magic Shows, Motorcycle Rides, Bake Sales, Races for… and saving boxtops, cans… It goes on and on.
I learned about inclusion (click here) and realized we didn’t need a “special track team” we only needed an extra support person to help Aaron to participate in the track team events.
“Disability World” Fundraisers
This led to more committees, grant writing, working for levy’s for the County Board of Mental Retardation and Developmental Disabilities as well as the regular local school district.
Other parents got to have jobs and earn money to help their families. I got to be the only non-paid person at numerous committee meetings.
Now, we did some great things that wouldn’t have happened without the volunteer parents. We began an after-school club and a summer school program so our children would have something to do and not lose all the skills they gained during the school year. We started four non-profit groups and incorporated. Yes, indeedy, sleep would have to wait.
But it never ends.
It is my feeling many of these organizations spend their energy insuring their own jobs and pay and giving lip service to the support of people they are supposed to be serving.
Autism Speaks, March of Dimes… are currently under fire because one of their main reasons for existence is to raise money to wipe out people with autism and developmental disabilities. They want a cure and spend much of their funds on sending Medical Doctors to conferences and conducting research.
But what about the people who are here now? These professionals, who make good salaries, have their way paid to conferences. Parents, who volunteer, not only pay our own way–we are supposed to donate to send the doctors? Plus, their executive directors make big big bucks. When I learned what some of the executives of these charities were making–that was it.
When it is all about charity, then it is all about the person who is giving the money. When it is about a person’s life and rights, it is about the person with the disabilities.
There are some large organizations who understand this, but most don’t. Here’s a post on my experience outside my grocery store (click here).
Everyone wants to help babies and young children
I know Aaron’s life was more interesting because of my leadership and volunteer work. But now he is an adult, and there are even fewer opportunities. Babies are cute and helpless and of course we want to help. But the majority of our lives we are adults. That’s 20 years as a young person and maybe 50-60 years as an adult.
So, I don’t do much volunteering for charitable organizations any more.
I spend every moment of my life working directly with the people with disabilities or the caregivers on the front lines. The ones who make little more than minimum wage. The people who take Aaron to the bathroom and clean up his messes. The people who celebrate Aaron’s diversity and think he’s a pretty neat guy. There is no tax write-off, no non-profits. Just people who care and need resources.
Segregated Charity–charity gone wrong
I don’t believe in onetime events like, “People with Disabilities Come to Church Sunday” where the church rents a ramp for the weekend (I couldn’t make this up). I don’t believe in Special Olympic Golf Fundraisers, when they won’t let Aaron even ride in the golf cart (“Oh, honey we just raise money for these poor children, we don’t actually want them on the course.”–couldn’t make that up either.) I don’t want Girl Scouts showing up at my door saying they want to play with my child because it is Lent and they have to do penance (some day I’ll share the details on that one.)
Rights–not Pity
As Joe Shapiro wrote in his classic book, “NO PITY.” People with disabilities don’t want to be the object of other’s charity. People with disabilities have needs, but they are citizens with rights. They don’t want the handicapped parking place because you are having pity on them. They want the handicapped parking place because as a citizen and consumer, they need the extra wide space so they can get out of their car. And, as an American, I’m proud our country recognizes that right to equal access.
If we really want to help people with disabilities–don’t give them your dimes. Instead make room in your lives and give your love..and your friendship. That is the best gift and, I believe, closer to the Biblical definition of “charity.”
Like I said, this is complicated.
Thoughts?
What are your experiences with charity models? With helping people with disabilities? What does it feel like when you are the giver? When you are the receiver? When do you feel pity? Charitable?
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Posted in Aaron, Advocacy, Autism, Caregivers, community, Disability, Disability World, Inclusion, Parents of Adults with Disabilities, Transformational Experiences, Ulrich Family | Tags: Arc, Autism Speaks, charity, fundraisers, Handicapped, Joe Shapiro, No Pity, parents of adults with disabilities, people with disabilities, pity, PTO, special needs, Stepping Stones, TASH
Wow, it sounds like you have had some tough knocks. I can understand your scepticism.
I don’t feel pity, I feel awed by the tolerance and strength it must take to live your life. I’ve just written a post about my massive need for sleep and here you are saying sleep can wait a few years. But then I worry I’m being patronizing. Then I worry that I’m being the type of person you talk about. And then I worry that I’m worrying about how I feel all the time. But I want to help. I want to support. I’m just scared of doing or saying the wrong thing.
If the tables are turned and I am the receiver, I have noticed that I can receive from those I respect and like. I am still working out the reasons why. The deeper question is why is the same gesture acceptable from some and unacceptable from others? Hmmm….Mary, you pose some challenging questions.
Alison Golden recently posted..Rebel With A Cause…Or At Least Some Thigh-High Socks
This was hard to write because I don’t want people to give pity, I’ve had a great life. Met some amazing people and am proud of what I’ve accomplished. But there is so much more to do.
Maybe you can help me say this better. It really is a complicated thought to explain.
I think you’ve answered yourself – two blog posts. Why I’ve had a great life. What there is left to do. List posts?
Alison Golden recently posted..The Green In The Green And Gold
You’ve given me some ideas for new posts. Thanks.
Mary E. Ulrich recently posted..The “R” Word- A Challenge to Bloggers
I think many charitable organizations exist for the benefit of their administrative staffers — just check any of the numerous websites that track the percentage of donated funds that actually go to the causes they support.
You’ve raised some excellent points, Mary!
Thanks Becke, I hope this all made sense. There are many groups who do a lot of good work. Can’t lump them all togehter, but definitely some to avoid.
Mary E. Ulrich recently posted..The “R” Word- A Challenge to Bloggers
Sometimes I just think that people write and dont really have much to say. Not so here
Thanks Reed. Welcome to the mountain. Hope you’ll tell us more about yourself and chime in.
You’re so spot on. The “no pity” thing is one of the things I had in mind right from Go with the Badass Project. How do you raise money for people without making it like some sort of handout in the spirit of, “Oh, you poor thing… you need my help”? It’s a fine line. People want to help, but implying that they’re “poor things” is contrary to what I’d like to do. Empower and assist, but don’t condescend.
Hopefully I can stay on the right side of that line.
Johnny B. Truant recently posted..The Badass Project
Hey Johnny, since you set up ClimbingEveryMountain.com, it’s more than cool you are commenting.
I’ve watched your posts and adventures in “Question the Rules” for over a year and know you have a good heart. I applaud what you are trying to do in your “Go with the Badass” project. I’ve also been following Jon Morrow and what he is trying to do. I’m sure you will find the right side of the “No Pity…Empower and Assist Line” but it has a razor edge.
It’s the segregated charity events (above) that cause me the most concern.
I’ll help however I can.
Aside from the shocking segregated charity events, the thing that fascinates and empowers me from this is your frustration with charities that spend a huge percentage of their donors hard earned money on admin costs. You’ve shown me (yet again) that despite what so called ‘business experts’ have suggested, there is a place for a charity run entirely on love.
That excites me more than I can really express because I’m the founder of a charity that, in real terms, is currently teeny tiny. But I have massive aspirations. We have no paid staff. It is all run by love. I was told by one person that we have to have paid staff because it gives us credibility! Posts like this make me more adamant than ever that there is a different way and maybe, just maybe, I have a part to play in demonstrating that.
Thank you Mary
El Edwards recently posted..How real superheros escape the man by spending less!
Wow El, tell us more about what you are trying to do.
Maybe it is more than a coincidence that Johnny (above) is looking for ideas.
I’ve been thinking about this all night. It is an important topic. There are no easy answers, but maybe together we can figure out some of the places to start.
BTW: There is a role for paid staff in some circumstances. But your work builds your credibility and speaks for who you are and what you are about.
Look up info on Life Space Interview (LSI), Crisis Prevention Institute (CPI), Therapeutic Crisis Intervention (TCI), Positive Behavioral Intervention Strategies (PBIS), and Positive Behavioral Facilitation (PBF). These concepts give a ton of segettrias and techniques for managing students with Emotionally Impairment.
By far the most concise and up to date information I found on this topic.
Thanks Laureen. This is a difficult concept for lots of people. Hope you will jump in and tell us more about yourself.
I once heard that once someone sets up an organization to help a cause, they guarantee that the cause will always be. As some of these organizations get bigger, it seems their goal is self-preservation rather than
fix” what they started out to fix and then shut down once the mission is accomplished. Great article.
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Thanks so much. Sometimes I feel like Scrooge. I really don’t like to be an outlier just for the sake of causing an argument.
The concepts of charities are so complex. I’m not sure if I would agree that “the cause will always be.” I have been on a number of ad hoc boards established for one purpose, “pass a bond issue” “start a summer school program”… But you are certainly right that many many boards are all about self-preservation ie. they will spend hours and hours writing a grant to do something they could have done in the same amount of time.
Thanks for throwing your “bark” into the ring. Hope you’ll stop by again.
Thank you for blogging. I appreciate your efforts.
Glad to have you here Antayla. Hope you look around at some of the other articles. The balance of charity and love is a tricky concept for many people.