Eight years ago I found my purpose in life.
As a successful person living independently with a severe neuromuscular disability, and after reaching many personal achievements and milestones, I came to the conclusion that not only was it important, but necessary to teach and pass forward knowledge on how to live the best life possible to others who lived like I did. I Once this epiphany hit, I left my job in public education and immersed myself in non-profits centered around disability and the Independent Living philosophy and movement.
By 2011, I started writing curriculum for a local Center for Independent Living. A little over a year later, I found myself promoted to the title of Project Director at the Texas State Independent Living Council. There, behind the scenes, I managed projects, wrote grants, and assisted in the planning of two statewide conferences.
Almost a decade later, after completing two master’s degrees in Counseling and Educational Leadership, and settling in a full-time position of advising students with disabilities at a local community college in their disability services department, I’ve learned that not only do people with disabilities need to know the tools to manage their lives independently and how to use them, they also need and greatly benefit from peer-to-peer support along the way. This, in my experience and expertise, can be best accomplished with a peer-directed and driven organization.
What is a peer-directed and driven organization?
A peer is defined by Webster’s Dictionary as, “a person who is equal to another in abilities, qualifications, age, background, and social status.” With a peer-directed and driven organization, the people affected by whatever problems the organization is trying to solve with its mission lead the way in that organization. Alcoholics Anonymous serves as an age old example of a peer-directed and driven organization. Recovering alcoholics run the meetings and provide support to people in the program. The program was invented by recovering alcoholics for recovering alcoholics and it stands as one of the most successful programs in history.
Thankfully, my position at Austin Community College provides me with the room to work relatively stress free, which in turn, gives me the flexibility and time to spend almost all of my free time devoting myself to the organization of my dreams, NMD United, a peer-directed and driven non-profit, developed with other adults living with neuromuscular disabilities.
As President of NMD United since its inception, I’ve learned powerful lessons about peer-directed and driven charities (PDDCs) that I hope will change how you choose to give your time and your money.
In this post, I’m going to hopefully convince you why a peer-directed and driven charity (PDDC) should receive your full support over a big box charity (BBC), like the Muscular Dystrophy Association, Susan G. Komen Foundation, or Autism Speaks. Not only will I tell you why you should choose a PDDC over a BBC, I’ll also provide you with the questions you should ask to find out if the organization you’re about to donate to is, in fact, peer-directed and driven.
Reason #1: A Peer-Directed and Driven Charity "Gets It" (cause we live it)
What do you see when you go to the website of a PDDC? Do you evaluate the composition of the Board of Directors? If you don’t do this, you should. The website should use language that clearly speaks in “us” and “we” over “they” and “them”. And if that charity’s Board of Directors includes a majority of people who are directly impacted by the charity’s mission, you’ve most likely found a charity that “gets” the population it serves.
What’s the harm in having a Board that doesn’t include a majority of people who are directly impacted by the charity’s mission?
Many big box charities (BBCs) will enlist the “unique perspective” of a few folks that it serves, but a few do not speak for many. Some BBCs will even have one or two board members impacted by the charity, but in many cases, the impact is one or two degrees away from the core of people it serves. For instance, a BBC that fights cancer will invite a parent, brother, or friend of a person affected by that cancer to be on its Board. When this happens the frame of reference behind decisions changes. A person’s natural instinct to make the issue more his or her plight pulls harder and away from the mark.
Missing or Hitting the Mark with Pathos vs. Logos Persuasion
You know when an organization is more about “them” than “us” when that charity tries to fix or cure the problem. "Fixing" and "curing" typically comes more from organizations who are in the business of eradicating the problem rather working within the problem. Often, the very fact that the charity uses “cure” or “save them” sympathy pathos persuasion shows that the organization understands those it serves from the outside in.
Likewise, it will be easy to tell with language when you’ve encountered a PDDC because logos will be the language of persuasion on the website. Each explanation of a program or initiative will appeal to your sense of logic or practicality, rather than pull at your heartstrings to feel pity and give. There will be no “fix this someday in the future” pleas, you’ll read more present-focused need statements.
There’s never a meeting or decision that goes by within NMD United’s Board of Directors or our committees where we have to continue to explain why we are creating a project that’s needed. We all know it’s needed because we live it. We empathize vs. sympathize and therefore, we specifically tackle problems that our entire community talks about with logical and practical present-day solutions.
For example, in 2014, when NMD United first became a qualifying 501(c)(3) organization, we received a generous donation of $500. This amount wasn’t enough to reach the thousands we serve, but we wasted little time in figuring out how to use the money well and to stretch it as far as it could possibly go. The Board decided to offer micro-grants to pay for Craiglist ads for the purpose of recruiting and hiring Personal Care Attendants (PCAs) and/or private duty nurses. We were able to give ten grants that directly and uniquely helped our community in ways that a BBC would never think to to do because only people who know the ins and outs of recruiting PCAs understand how challenging it can be to pay advertising fees.
Reason #2: A Peer-Directed & Driven Charity Puts Your Money to Best Use
This ties to the example above. A PDDC can take a smaller donation and stretch it in ways that are creative and meaningful. In the example above, one donation of $500 became ten micro grants for advertising, which in turn helped our members recruit and hire individuals who would allow our members to be more independent and safe in their communities.
Ask yourself, “What would a big box charity do with my money?”
The key to the term “big box charity” is the word “big” and while some peer-directed and driven charities get big, they are often smaller and designed with a more grassroots feel. By “grassroots” I mean a charity with less of a budget to put towards staffing, fancy brochures and fundraising announcements, and thank you gifts.
Two years ago, a friend of mine donated to a BBC and regretted her decision when she received a free tote bag in the mail to thank her for gift. She wanted as much of her donation as possible to assist in the mission and didn’t want to “buy” a new tote with the charity’s name on it. Because of this, this year she made the decision to donate $250 to NMD United. Our PDDC provided two assistive technology grants and one consumable medical supplies grant to three people in our community. Helping an adult with a neuromuscular disability afford a voice activated lighting system for his home or paying for a month’s worth of catheter supplies made my friend feel like her money reached farther and made a deeper impact. Rather than a tote, we sent her a lovely thank you email that didn’t take a dime of her donation to send with a receipt to use for her taxes.
Reason #3: A Peer-Directed and Driven Charity Does More Than Just Give, It Employs
Just as I asked you to do with evaluating the Board of Directors, it’s also important to evaluate the staff of any non-profit organization. A PDDC will have a staff composed mostly of people who are directly impacted by the mission of the organization, which echos all the good benefits already mentioned above in Reason #1, but it also makes the organization more accountable on all levels because everyone involved becomes invested in the charity’s success from a personal standpoint and problem solving is approached with a “nothing about us without us” attitude.
Embrace LinkedIn When Researching Your Charity
One thing I like to do when evaluating a charity is to research staff employed with the charity I’m about to give to using the career networking website, LinkedIn. It is here where I can usually see how a charity is structuring their human resources. For example, if you evaluate the LinkedIn profiles of many staff members employed with the Muscular Dystrophy Association, you’ll see profiles typical of fundraisers and marketers, almost none of whom have a neuromuscular disability. If you do the same research on a PDDC, like NMD United, for example, you’ll find that everyone working for NMD United has a neuromuscular disability and all have strengths that tie to our mission.
Who would you rather go to for a valuable resource? A person without any concept of what it is like to live with your particular needs or someone who lives your type of life day in and out?
By employing peers, peer directed and driven charities break through stereotypes often perpetuated by BBCs that those who are receiving the help cannot help themselves. A BBC who uses pathos pity language is boxed into keeping up appearances by not empowering the community it serves through employment because that would contradict their narrative.
With skyrocketing unemployment numbers among people with disabilities, providing work, internship, and volunteering opportunities within a PDDC like NMD United is a fringe benefit that not only makes our organization stronger and more genuinely helpful, but it benefits society as well.
In conclusion, the next time you have a $50 donation to a great cause to make, I hope you research the organization you’re about to send your money to with the tools I’ve provided and then make the decision to support a peer-directed and driven charity with your dollars. When you choose a PDDC you’re choosing to hit a more direct and purposeful target with your dollars. You’re supporting the employment of people who understand the authentic impact the mission of that organization has because they live it everyday. And finally, instead of choosing a pat on the back and a tote with the charity’s big box logo on it, you’re choosing less frills and fanfare in favor of just the knowledge that you most probably helped to simply solve an immediate need in someone’s life.
To learn more about what NMD United is doing as a peer-directed and driven organization, start by reading more about our mission here and be sure to check out some of the other charitable organizations listed in this blog.