There’s an important question that may get too little attention in the world of disability services, activism, and culture. If we really care about people with disabilities and disability issues, we should all do better than just tossing pocket change in every fundraising bucket we see, or signing up for every walkathon a coworker’s kid puts in front of us. But how do we choose which disability-related causes and organizations to support?
Some criteria are the same for any kind of charity or organization seeking voluntary support. Look for sound, transparent finances and accounting practices. Make sure they use funds to further an important mission rather than simply enriching top executives. Support organizations that give regular, readable reports of services provided, advocacy accomplishments, and goals achieved. Look for strong oversight by a genuinely representative Board of Directors or similar governing entity.
These are basic tips for choosing any charity or cause, for donations or for volunteering. But what other qualities should we look for specifically in disability organizations? Here are some criteria and questions to ask, and why they are important:
Organization Type and Scope
- Medical research and treatment
This is the most traditional and well-known type of disability organization. Their goals are mainly to fund medical research into treatments and cures for specific disabling conditions, and in some cases to help provide some of those treatments to people with those conditions.
The closest thing to an original is the March of Dimes, started by President Franklin D. Roosevelt in 1938 to find a cure for polio. But the model continues, with some modernizing alterations, in the March of Dimes itself and in other legacy organizations like the Multiple Sclerosis Society, Muscular Dystrophy Association, United Cerebral Palsy Association, and the Alzheimer’s Association. Notably, many of these organizations are better known to the general public for their fundraising events, and less for the work they do.
Most disability organizations provide at least some personal and material assistance directly to disabled people and their families. For some, direct service is the main focus. Services can include funding for adaptive equipment, paying for certain high-cost medical procedures, or enriching experiences like support groups and summer camps. In local chapters and offices, direct services may also include one-on-one information, counseling, and advocacy assistance to address disabled people’s everyday needs, concerns, and barriers.
Two examples of agencies that provide direct services are The Arc, which encompasses hundreds of local chapters that serve people with intellectual and developmental disabilities, and Centers for Independent Living, a nationwide network of local not-for-profit organizations which are governed and staffed mainly by disabled people and serve people with a wide variety of disabilities.
Direct advocacy for individuals facing disability discrimination and other barriers is a type of direct service. But it is also inseparable from activism, in which disability organizations, more loosely organized groups, and individual advocates fight for permanent changes in practices, policies, and laws to make life better, more accessible, and more just for all disabled people.
Some organizations, like the American Association of People with Disabilities and ADAPT focus mainly or exclusively on advocacy, while others like Centers for Independent Living, the National Federation for the Blind, and the Paralyzed Veterans of America combine advocacy and activism with direct practical services.
Some people prefer to focus on people with a particular kind of disability. It might a very specific condition, like Down Syndrome, or a somewhat broader category of disability, like intellectual and developmental disabilities, mental illness, or mobility impairment and wheelchair users. Another approach is to support organizations and coalitions that try to serve and advocate for people with the widest variety of disabilities, on issues and barriers common to all or most people with any kind of disability.
Which approach you choose, or what exact balance you choose between the two, can have a lot to do with how you view disability itself. Some people think of disability in terms of very specific medical conditions or types of impairment. Others see disability as more of a social experience and a political challenge. Some feel that only people with their type of disability can understand them, while others believe that even people with vastly different disabilities share enough common experiences to make collaboration and unity sensible.
Mission and Messaging
- Does the organization have a mission statement that is strong and specific enough to stand out?
“Help the disabled” isn’t much of a distinct mission. Look for more specific goals and indications of the group’s philosophy and point of view on disability matters. And if its mission sounds a lot like that of a dozen other similar organizations, think about whether a new entity doing the same thing is really necessary.
- Is it clear up front whether the organization is a not-for-profit or a business?
It’s not always obvious on the surface. Most organizations more complex than an informal social club operate to some extent as businesses. They bring in money, spend it on salaries, supplies, equipment, and maybe rent, and keep account of their finances so they can report to the government and the public. But some sell products and services, primarily to make money for operators or investors, while others raise or make money in order to continue providing a service or pursuing a mission for the public good. You can choose to support both not-for-profit disability organizations and businesses that have a disability angle. Either can be beneficial. But how you judge and support a not-for-profit charity will probably be different from how you assess and patronize a for-profit business.
- Is the organization’s messaging on disability positive and empowering, or does it appeal more to pity and charity?
This is one of the most important and difficult things to assess, because there are few hard and fast rules. However, most disabled people, and others well-attuned to disability culture, will recognize right away the difference between empowerment and pity in a group’s slogan, fundraising appeal, or advertisement. It boils down to whether the messaging makes you feel sad for disabled people’s plight, or excited for their potentially better, freer lives.
- Does the organization strike an effective balance between promoting its mission and philosophy, and maintaining good relationships with the community?
Some disability organizations promote all the right goals and ideals, which are relatively easy to put together in a mission statement, but avoid opportunities to make a real impact for fear of being seen as “controversial.” Real, meaningful change for disabled people isn’t always popular, so this is a particular danger with local organizations. They face a lot of “peer pressure” from other area agencies and service providers to be a “team player” and promote a wholesome, non-confrontational image to the donating public. Diplomacy is good. Being a pushover in the disability field isn’t.
- Are any of the founders and/or top leaders disabled themselves?
The point here isn’t to say that non-disabled people have no legitimate role in disability organizations. But organizations with disabled people in top governing, executive, and professional positions have an authenticity that others may lack. This should mean more than just one or two disabled people with one or two of the most easily understood and accepted disabilities. Look for people throughout the organization with a variety of disabilities, including some that require more accommodations and pose a greater challenge to public understanding. Leadership of people with disabilities, or lack of it, also indicates a disability organization’s commitment, or lack of commitment, to its own ideals of equality and inclusion.
- Does management, with or without disabilities, apply the same principles of disability rights and accommodations to its own disabled employees?
This is another key measure of commitment and follow-through. And a surprising number of disability organizations aren’t so good at treating their disabled employees the way they ask other employers to treat disabled people. Keep an eye on the disability organizations you support. And take seriously any indications of poor labor practices, especially in regard to disabled employees.
Fair Pay and Workplace Equality
- If there are paid staff, how many of them are disabled?
Disability representation isn’t just about leadership at the top. Disabled people should be working at every level. This includes not just support positions, but service provision, professional roles, and management.
- Are all disabled staff paid fairly for their work?
Somehow, it is still considered acceptable to underpay disabled people for their work. Some assume that disabled people don’t need “extra” money, because they get government benefits. Others may think of disability work as a calling rather than a job, or that they should be grateful for any job at all. But disabled people have terribly high rates of poverty. And being paid for your labor is a cornerstone of civil rights that disabled people absolutely deserve. Any disability organization that wants to be an advocate for equal rights and fairness should pay disabled employees at least minimum wage, and as much as possible, competitive and/or living wages for their work. This doesn’t happen by accident. Decisions must be made to not skimp on salaries through use of legal sub-minimum wage, or over-reliance on unpaid interns and volunteers.
Also note that disability organizations that spend a lot of their budgets on salaries aren’t necessarily wasting money. Paying good disabled staff well is good for a disability organization. It’s also an important statement of values.
- Are there realistic and actively supported paths for promotion and higher leadership for disabled people within the organization?
Hiring disabled people is one thing. Paying them fairly is key. But especially in a disability organization with a complex mission and diverse roles, is there room for career growth and promotion? Is it not only technically possible, but feasible and encouraged for a disabled receptionist to someday become a counselor, or for a disabled barista in a cafe promoted as an employer of disabled people to become a shift manager?
- Are all of the organization’s facilities and services accessible?
Above all others, disability organizations should be accessible. This should be obvious. But they don’t always succeed. Sometimes, disability organizations focused on one or two particular types of disability fail to accommodate others. Some groups become complacent, figuring that their work on disability makes them immune from criticism for accessibility failures. And as services and methods of communication change over time – such as websites and live streamed events – many organizations overlook making each new avenue fully accessible.
- Does the organization actively recruit involvement of people of color, LGBTQ+, and people from other marginalized communities?
Disability exists among every culture and demographic population. Yet historically, the image of the disability rights movement and disability culture has been overwhelmingly white, male, and straight. Like all organizations, those devoted to disability work must actively strive to achieve greater representation. Disability groups in particular must guard against complacency in this, and reject the notion that representing disability is enough diversity all by itself.
- Does the organization own, operate, or promote services that take place within segregated facilities were disabled people are intensively supervised and confined?
This is perhaps the most significant measure of difference between disability organizations and the philosophies that drive them. It would take too much space to fully explore all the pros and cons. Suffice it to say that the difference between providing individualized services in the community and running facilities is fundamental. Whatever you think about the question, it’s vitally important to ask which approach a disability organization takes before you decide to support it.
This seems like a lot of questions to ask, and a lot to look into. Really it’s just a start. But if you are going to support disability causes with your money or time, it’s important to take your time do do it right. Disabled people and our issues are more than an easy throwaway cause. They should be treated due care and diligence by everyone involved.
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