We elect politicians to represent us.
We tune into the news to inform us.
We support disability organizations to, in turn, support and advocate for us.
That is, until recently.
Much attention has been brought to the fact that, throughout the past thirty days of the current White House administration, elected officials are proving to either be willing participants in the disarray that is occurring at the federal level or, at best, insufficient in their ability to protect their constituents.
Additionally, lamenting the state of mainstream media in the US- which has become the dog that’s being wagged by the tail that is the current White House administration- is now commonplace on social media platforms.
(The social media platforms that still allow for such posts, that is…)
What’s getting less attention, however, is the fact that entities within the nonprofit industrial complex, particularly those that receive (either directly or indirectly) federal funding to advocate for marginalized people, are failing to fulfill their mission/vision/values- to the point of engaging in actions that threaten the safety of the people they purport to serve, as we have recently seen with Rape, Abuse, and Incest National Network (RAINN), the National Sexual Violence Resource Center, and the National Center for Missing and Exploited Children and their willingness to erase trans peoples’ from their media and training materials. Well-funded white feminist reproductive rights organizations like Planned Parenthood and National Abortion Fund are pushing agendas that both fail to meet the needs of average, everyday people and thwart the efforts of local, grassroots initiatives.
The #DisCo is not exempt here: major national disability advocacy organizations such as the Disability Rights Education and Defense Fund (DREDF), the National Disability Rights Network (NDRN), and the National Council on Independent Living (NCIL) unilaterally failed to inform stakeholders about a lawsuit that threatens Section 504 of the Rehabilitation Act of 1973 until four months after it was filed.
Spaces that operate within the nonprofit industrial complex, including #DisCo organizations, are notorious for fostering environments rife with racism, transphobia, financial exploitation, protecting predatory leaders, scapegoating whistleblowers and other toxic behaviors that society is reticent to acknowledge.
Because no one wants to say “bad” things about “good” people… Even if those things are true.
Nevertheless, the times we are living in compel many- particularly Black and Brown disabled people who are especially vulnerable to the whims of the current White House administration- to determine that it is necessary to “make do” and, therefore, work with the big #DisCo organizations in hopes that their expanded reach will amplify individual effort.
But the system that oppresses will not fund the liberation of people from said oppression.
Some additional points of consideration for those who are considering engaging in advocacy work adjacent to or within the nonprofit industrial complex:
1. To reiterate an inconvenient truth about movement work, advocacy, and other forms of civic engagement: the spaces where this work is usually done are not immune to the systemic oppression that permeates society, as a whole. As such, these spaces are inherently dysfunctional, yet, because they typically exist in response to injustice, are extremely reticent to even acknowledge, let alone address said dysfunctions. Individuals who seek out accountability for the oppression they experience in such spaces can anticipate the dismissal of their concerns, scapegoating, and/or expulsion from said spaces.
2. The vast majority of #DisCo nonprofits- particularly national-level advocacy organizations- do not do intersectional advocacy. Some seemingly force you to leave your “unrelated” identities at the door in the interest of discouraging “distraction” from the identity of focus. However, identities do not exist in separate vacuums- they coexist inside of human beings. Demanding that a person focus on one identity at the cost of the others isn’t just unrealistic- it’s oppressive.
3. Despite the fact that few truly intersectional organizations exist, nonprofits operate in silos and are notoriously territorial. This further limits the intersectional movement work that 21st century people need and is yet another example of how the nonprofit industrial complex’s demands- which are driven by funding parameters- artificially shape how advocacy work manifests.
4. Organizations within the #DisCo silo demand accessibility and inclusion from the other silos. However, such demands are framed by the lens of white disability, which prioritizes physical accessibility and often diminishes the unique accessibility needs of Black and Brown disabled people. This, in turn, skews how organizations that specifically work with Black and Brown people perceive disability experience- to the point of erasing the disabled Black and Brown people that they are currently supporting.
5. Nonprofits receive funding to “help” people. They do not receive funds to heal society to the point where people no longer need their help. The #DisCo, specifically, is focused on “helping” those who participate in Home and Community Based Services (HCBS), a Medicaid program that, although less than ten percent of people with disabilities participate in it, accounts for the vast majority of revenue that circulates in the #DisCo. Access to HCBS is fraught with barriers that are rooted in systemic racism, barriers that the #DisCo has shown no interest in addressing.
And, so:
6. Regularly self-audit the nonprofits that you share your time, talent, and/or treasure with to determine how they are currently benefitting you. If you determine that you are experiencing racism, that your feedback is unwelcome, that your expertise is not taken seriously, etc. then consider whether or not it makes sense to remain a stakeholder of the organization. Time spent fighting oppression within a nonprofit does nothing more than take away time from doing the same in mainstream society.
7. Remember that the work you are called to do can be accomplished in ways that do not permanently tie you to a particular nonprofit space. This is especially true regarding people with disabilities because they exist in spaces that are largely ignored by the #DisCo. Incarcerated settings, for instance. Consider working with grassroots initiatives and “boots on the ground” nonprofits that operate outside of the nonprofit industrial complex. Consider working alone. Be willing to regularly determine for yourself the best course of action for you.
8. Keep in mind that nonprofit organizations, including those within the #DisCo, are primarily concerned with two things: maintaining their funding and maintaining their status. This leaves little time to adequately meet the “complex” advocacy needs of multiply-marginalized people. Discern accordingly.
9. The presence of Black and Brown people in a space does not mean the absence of racism. Oftentimes, those Black and Brown people are in that space because they’ve proven to be an ally in the maintenance of the space’s racist status quo. Discern, discern, discern.
10. Because nonprofits are perceived as existing “for a good cause”, people who are harmed within such spaces not only need to anticipate not receiving validation for their experiences within the organization- validation often doesn’t manifest outside of the organization, either. Do not underestimate how devastating to one’s mental health this can be.
11. The paradox of advocacy work is that, far too often, it derails efforts that could lead to real systemic change. Including your efforts. Particularly if such efforts threaten the financial and/or cultural status of the nonprofit organizations that are supposedly engaging in advocacy work.
12. As the current fiasco surrounding Texas v Becerra is showing, #DisCo leadership are proving to be unreliable in keeping people with disabilities abreast of federal-level activities. Additionally, no actions have been initiated by #DisCo leadership to protest- or even inform stakeholders about- the inclusion of individuals like RFK, Jr. into the current White House administration- he has made it clear that he intends for Black and Brown children with behaviorial disorders to be shipped off to “reparenting camps” and has a long history of spreading misinformation regarding vaccinations. The onus is, therefore, on individuals to stay informed. Seek out information sources that you determine to be reliable and share information with your networks accordingly, including sites like GovTrack (federal legislation), Justia (federal lawsuits), Project 2025 Tracker (up-to-date info on Project 2025’s progress), and American Medical Association (content pertaining to public health).
13. Humans are conditioned to operate in community: whether that stems from a biological imperative or not, refusing to hand over your power to something outside of you is absolutely essential to engaging in advocacy work in a manner that does not debilitate you.
Ultimately, the work you do with nonprofit organizations, including those within the #DisCo, should amplify your power, not usurp it. Trust your gut. Discern accordingly.
And do not allow yourself to be oppressed “for a good cause”.
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