Crowdfunding Disability: Pay for the Change That You Want to See in the World

From those studying the medicinal benefits of centipede venom to those researching the existence of life bearing extrasolar moons, scientists have turned to crowdfunding for issues which have captured the popular imagination but have been overlooked by a traditional grant process.  Without commenting on the value of individual projects (one questionable project has funded a review of frog sounds in the Amazon), I’m fascinated by the phenomenon of crowdfunding allowing people to put their money where their passion is.

It’s a cliché that everything in our society costs money, but that doesn’t make it less true.  Rather than lament a reality that I can’t even see a way around, (after all, whether it’s rent, utilities, food, or equipment, most money for expenses goes to people who themselves have bills to pay) I love the idea that crowdfunding gives society the opportunity to pay for the things that they deem valuable, and thus bring them to fruition.

It is with this in mind that I have begun to consider an idea that has been suggested to me by various individuals for over a year, the idea of crowdfunding my activism.  I have been reluctant, because it’s hard for me to articulate the return on investment with changes that I can’t promise, but I decided to throw the issue to you, that the realization that the only true measure of whether my work is worth funding is it folks decide to pay.

Here’s how I’ve come to understand the issue.

There are two types of activists.  One is the volunteer activist.  This individual, while maybe in some cases independently wealthy, is usually someone with a full-time job outside of the world of activism, who devotes his or her spare time to a cause.

These folks really are the backbones of social movements, contributing the massive energy and capital, social and financial, that brings change.  With many competing concerns, however, it can be difficult to be the architect of change in your spare time.

The other is the professional activist.  These are the dedicated individuals, who, often for meager salaries, funded by grants and large donations, actually get to spend a substantial portion of their professional time working on change.  (I say a substantial portion because the reality of these jobs is that the majority of time is often spent fundraising to support the work.)  Most leaders of the major historical social movements at some point had to transition to this type of full-time role in order to truly make a difference.

I feel that this has been complicated for disability movement.  Many people with disabilities lack employment, it’s true, but that simply means that they are on a day-to-day struggle for subsistence, leaving even less time for energetic activism then those working other jobs.  While there are sometimes government benefits available for certain disabilities, maintaining eligibility and managing those benefits is itself a major undertaking, balancing the minuscule sums in such a way as to maintain some kind of life is a never-ending daily dance, and many people, like me, remain, thankfully, insufficiently limited by our disabilities to qualify for some categories of benefit.

That people with disabilities have, as far as we have while balancing these realities is laudatory.  That we haven’t come further is unsurprising.

This is complicated by the fact that living with a disability is expensive.  Most of us cannot live in the rundown walk-ups, split between five people, which are the stereotypical native habitat of the activist.  Medical conditions may prohibit us from eating the cheapest food available, access conditions may prohibit us from traipsing around our cities to find the cheapest food prices, and insufficient assistance available for activities of daily living probably mean we need to buy more prepared food than the average activist.  Many of us can’t ride bicycles or share the same 1980s Chevrolet among the five denizens of the previously mentioned walk-up.  When we travel, sleeping on the floor is right out, and we often need to pay extra to meet our needs in other environments.

And so, there are professional disability activists, but a disproportionate number of them are lawyers, since the civil rights statutes have attorney’s fee provisions and there is some federal funding for ADA enforcement, but this is a very specific type of activism.  Many of the balance are supported by vastly underfunded federal programs specifically designed to focus on expansion of services for people with disabilities.  If they spent too much time on activism, they would probably lose their funding, if not their jobs.  In essence, they are like the first category, with a day job in disability and activism on the side.

Is it any wonder then that a philanthropist friend asked me the other day when the disability movement would get its next big leaders?  We were blessed with Justin Dart, and a few other people in our history that for whatever reason had personal circumstances that allowed them to travel and speak and build a movement.  But we could be a long time waiting for the next one.

Even in my own humble efforts, most of what I have been doing is simply because of my current involuntary state of underemployment.  Every day I apply for jobs that, should I receive them, will sharply curtail my ability to write and speak on these topics.  I have to, because none of the articles that I write or the speeches that I give provide any means to pay my basic living expenses.

Further the, my ability to speak is limited by the complete lack of funds available for me to travel.  Forget honoraria, I have to decline most speaking engagements because small synagogues or organization where I might spread a message can’t come up with the substantial sum to fly me out, put me up in a hotel, and pay for my care and equipment on the road.  A two day trip to New York last month cost in excess of a thousand dollars.

So at the heart of this article is a question: what is my activism worth to you?

I know that people like to read what I write, because they tell me so at length.  I know that people are moved by my speeches, and my perspective, because they tell me so.  What I don’t know is if people attach sufficient value to my writing and speaking and advising to provide the funds to allow me to continue.

I differentiate this from the wonderful people who have lent me money to pay my rent and eat over the course of this year.  These people are being generous for love of me, and I’m forever grateful.

I started this piece, however, by saying that crowdfunding allows us to use our resources to enable work that we think is important.  So, again, if I were to set up a crowdfunding site, what might you give?  More than that, what might you want?  My understanding is that most successful crowdfunding campaigns offer clear benchmarks for their funders.  So, in exchange for your funding, what do you want me to write about?  What and where do you want me to speak about?  What else do you want to see me doing?  Most of my articles are prompted by issues that I have been asked or moved to address, and my speeches are by invitation to organizations that want to hear what I have to say.

On the larger question, if it’s not me, what other type of activist would you crowdfund?  What would you want them to do?  Whether or not you believe that I am the necessary change agent, I hope that we can come to consensus on the idea that change is needed, and that money is needed to facilitate that change.

I love and respect the activists that work for free.  More than that, I’m a little jealous that they can.  But isn’t it about time that we start recognizing what activism is worth?


8 thoughts on “Crowdfunding Disability: Pay for the Change That You Want to See in the World

  1. Powerful point that most people who are making money out of activism are lawyers … they get paid for working for a cause, so why shouldn’t you? Very thought provoking post. People want to know what will be achieved for their money — even a couple of dollars. What would you say the top three reasons are that someone could spend the equivalent of a cup of coffee? How would their few dollars make you a more effective activist? It doesn’t have to be elaborate — or even beneficial to them personally. For example, you could tell three short examples of how one speech you travelled to make changed the wellbeing of an employee, their family, their kids, their parents …

    Liked by 3 people

  2. I think having individual or self-advocates is our best approach to changing policies and attitudes. I would contribute, but having a tangible goal is reasonable, isn’t it? Paying for a specific promotion, public awareness campaign, etc, that was spearheaded by a self-advocate would garner more support.

    Liked by 1 person

  3. Hi there! I’m new on the site, and having trouble navigating to your main blog to see what types of disability activism you’re involved in…. But I think that what you’re proposing is a brilliant idea. I myself am forming an attachment to the Deaf community, and despite the progress they have made, there is still much they could benefit from in terms of a movement. Further, working with students on the autism spectrum, I’ve begun to learn that funding their needs is equally difficult.

    Every movement has to start somewhere, with someone– and, as the unfortunate reality would have it, with some funds. There are more than enough humans in this world looking at the same problems we are, and wondering how they could possibly contribute; crowdfunding gives them that opportunity, however small their own contribution is. It takes many small drops to fill a bucket, and each drop is just as valuable as the next.

    I personally may not be able to contribute much at the moment, although that “not much” would be the most I have to give, given with my whole heart. But, even for those that can’t contribute, other options exist– sharing the link, for instance. Boosting the signal. Or, perhaps, appearing at events and giving freely of their time and equipment in order to help ease the burden of the expenses.

    It is very, very possible. More than that, it has the potential to be a huge success. All that’s left is to get started, and trust that the right people will find you in the right moments.

    Best of luck. I can’t wait to see how this unfolds, and I hope to be a part of it.

    Liked by 6 people

  4. abuckley2014 says:

    Would you be able to do this and continue to receive disability? That would be my concern for you because of the limited amount of money the Fed lets you make without losing help. If you receive disability; i am assuming you do.

    Liked by 1 person

  5. I am wary of putting my support behind a person in a crowdfunding situation. That smacks too much of politics. I would much rather support an idea or a cause or a community. And i find it ironic that I am even saying this because we were just doing some crowdfunding to get my dad a wheelchair van.

    Liked by 1 person

  6. Thank you for writing this piece. There is a need, at least I think for real activism when it comes to disabilities. I have a few myself, and am always looking for ways to better myself, at this point it seems my dreams are still just that.

    I feel helpless sometimes, one of my closest friends I watch suffer through horrible pain everyday from a treatable condition. Sadly Medicare will not cover that treatment. He has a condition that has caused his teeth to be brittle, yet the roots are fused to his jaw bone, he has had an abscess in one tooth for 5 years now that is resilient to antibiotics and has worked it’s way into the jawbone, He is diabetic and he has a heart condition. He is told he needs to have an extraction under general anesthesia in a hospital situation. The only Oral Surgeons in his area wont do the work at a hospital, and they won’t allow him to make payment arrangements. He can’t afford the nearly two thousand dollars the two oral surgeons in the area want. It is literally killing him, and medicare will not budge.

    Yet over the years I have donated time to area charities and I have seen meth addicts getting the state to pay for all their teeth to be removed, which is likely what my friend needs. I am truly saddened that it seems I can do nothing but watch. I have made calls to Medicare, and to various charitable organizations, I’ve called doctors, dentists, oral surgeons, and general surgeons. I’ve done all I think I can, if I was not subsisting on a pittance each month I would loan him the money or pay for it myself. He can afford so little that he is wearing a pair of glasses that he got 15 years ago and hasn’t had an optometrist appointment in as long. I bought him a pair of shoes this Winter for Christmas because he had holes in his shoes.

    I do hope that your goals can and will be met. The disabled need a voice, and not just some lawyer more worried about his career then the talking, writing, campaigning, and caring.

    Liked by 2 people

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