Sunday, February 26, 2023

The Hard Truth Of When, Sometimes, Help Does Not Exist (Even Though It Could)

 ...

Note: I am available for consultation work, curriculum development, trainings, etc.. I enjoy partnering with organizations on development of more accurate understandings of social reality. 

I can be reached by email at taylor.geomatics@gmail.com

Please consider donating to support this work. I am disabled, financially struggling, and am forced by existing social structures into producing content like this for free. I hope those with means and privilege will eventually shift priorities toward increased support for lived experience content generation and expertise sharing. Donations are never required and always appreciated. Donate Link: https://ko-fi.com/socialrealitylab

...

I've been kicking around this idea for months. It's taken various forms and I can acknowledge it's a deeply unpleasant topic and may not even be true. I nonetheless have years of experience as a peer support community member making me ask the question. And I'm not convinced that it's not true.

What if the current resources on offer, the whole suite of them, sometimes still aren't the answer. Sometimes doesn't mean never. It's quite clear we're helping some people some of the time. This can range from 'helped a bit" to 'helped a lot" to "completely life-changing and life saving". Sometimes.

Other times though, subsets of the traumatized community go years or decades without being helped. And maybe one reason why is that the help doesn't exist. At least not yet. At least not under existing social and mental health theory structures.

Does this mean they are doomed to total hopelessness forever? No. The idea of "doesn't exist now" only means not now. Not under current conditions. And even "not under any likely future scenario under given conditions". A space station orbiting Jupiter is "possible", but won't happen in our lifetimes. So, when we say not possible, we're saying it similar to the Jupiter space station. We could do it. We sure as heck aren't.

I like to call this theorized (and I think very real) population the "Won't Be Helped", and I don't see much written about them ever. The most common response I see to a currently unhelped person is... "you haven't tried the right resource yet. Keep going. One is it out there!"

And that response begs the question ... is it actually true?

Does a resource exist for every person in need? Is their only and sole problem that they haven't been connected yet? It that true for every single unhelped person? I don't think so.

I think a substantial number of individuals are "Won't Be Helped". We keep sending them from resource to resource, and none of it is working. That's the reality.

The answer is - figure out what they need and build it. Ideally by asking them what they need and empowering them to co-build it with whatever resources can been mustered. They might not know what they need yet, and that itself can be part of the goal - helping or equipping them to even figure that out.

One place the above actions somewhat do seem to happen are what I call "beyond-the-system" resources. The "Won't Be Helped" with similar issues find and build resources for each other. It's usually extremely removed from any pre-existing established thing (since, by definition, those places aren't helping). Often the reactions to this have been hostility rather than celebration. Rather than being supported, such places are more often than not attacked. These peer communities "don't know what they're doing". They're not following established systems (and why would they - the established systems aren't helping them).

These peer communities are typically extremely low resource, even by mental health standards. And they are the absolute last bastion of hope. If even these resources don't exist, the "Won't Be Helped" are, well and truly, not helped. Not anywhere. Not ever.

You may say "build it yourself", and I wonder whether anyone who has ever offered that advice has ever tried. Especially after first considering what privilege they may have that the person they're talking to doesn't.

A "Won't Be Helped" person, by definition, has no effective help. Not ever for this. They are likely impaired by extreme distress. This is not some young, full of energy, go-getter. It's typically a beleaguered, kicked down, formerly and presently abused person. It's the last person who should be tasked with, solely and on their own, generating a community of support for themselves from scratch. It's a grossly unreasonable, and arguably wholly unfeasible ask, to make of many of the "Won't Be Helped".

And the takeaway point is this. Assuming you believe me that this population exists, one of the worst things to tell them is that help does exist. While certainly well-meaning, it's straight up gaslighting. Denying their reality and actively invalidating it.

What they need, in my estimation, is the opposite. The mental health community needs to acknowledge this population. Validate that they are real. Yes, in some sense, validate that under current circumstance there is no current hope. And get to work changing things. Build support for this community. Build an Office of Identifying And Finding Ways to Helping The Won't Be Helped, and invite these people to participate. Give them a place to go. One they clearly don't already have.

If we acknowledge that the help simply does not exist, it becomes much harder to justify continuing to not provide it.

If we insist the help does exist (in the times where it doesn't), it makes it much harder to make the case to change anything. It makes us, as is often the case, blame the "Won't Be Helped" as not trying hard enough. It's telling them to pull themselves up the bootstraps while simultaneously justifying not doing anything in the way of changing things.

I don't know what evidence is needed. I have hundreds of reports of peer interactions saying this is real. It feels sad that I have to prove this population exists (I think it does). I'm willing to prove it. Often the evidence is dismissed and I don't know what to do about that. Calling my evidence not worthy of evidence is whole other blog post that can and does need to be written.

We need to help the Unhelped. Guide the ones who can be helped by existing resource to them. And start cataloguing the stories of the ones who can't, and do something different so we can start to fix that.

I'm happy to work with any organizations, groups, or individuals who want to work within this reality. Acknowledging the reality of this is not confining the "Won't Be Helped" to forever hopelessness. It is, I would argue, the exact opposite.

As Bernice King, daughter of Martin Luther King jr., once remarked...

"Being truthful about the state of our nation and world does not equal losing hope. Hope sees truth and still believes in better. That which dismisses or does not seek truth, but grins, saying "It will be okay," is naiveté, not hope."

People are not okay. Help is not always just around the corner. I'd be happy to be proved wrong but I'm not seeing it and I'm tired of being told I simply must be wrong. Maybe instead of working so hard to prove me wrong, challenge your views and start to ask if I'm actually right on this one.

I'm sorry if it's a hard thing to admit and I don't know what to say to ease this report. But telling people that help exists when it doesn't is not actually help at all. It's the opposite. Real help, and real hope, starts with truth - even the hard and ugly ones.

Maybe I'm wrong though. What do I know. It's just the life I myself have led for an entire decade. And I have hundreds of comments like this from my peers...

"All I have in life is the ability to keep existing. Everything else is out of reach."

Maybe stop telling them they're wrong. Maybe acknowledge that they're right. And maybe instead of denying it, start campaigning to build somewhere to fix it, so I can finally send these people to somewhere that will actually help them.

Concluding Thought - What Can Be Done?

Here is one final note toward the positive, in case this post left you feeling defeated.

I will reference that I titled this post "even though it could". One thing I didn't mention yet - in addition to sending people off to other supposed resources, many individuals feel disempowered from doing anything themselves. It's the notion of "there's nothing I can do". That's not technically true. There's plenty you could do. Much of it might come at various personal cost, some of it severe. And much of it is uncertain and low likelihood of success.

What I can offer is the "not nothing approach". When you encounter a "Won't Be Helped", do anything that isn't nothing. Get creative. A single email to a peer. A letter to a professional group in protest of the status quo. Even just not invalidating them is a sort of, if not help, at least not causing further hurt. Make a phone call advocating (with their authentic approval) for them instead of making them do it themselves. If we do nothing, nothing changes. If we something, anything that's not nothing, it's at least a chance at change. Enough not nothing can snowball into quite a bit of something.

...

About the Author

My personal efforts to build some semblance of own or community care occurs at the Peer Voices Network project. We're just getting started, and maybe it will show a vision of what could actually help people like me. Maybe it will one day lead to access to something that would feel like actual help. The reality still feels more like non-help than anything else at the moment.

The hopeful vision (as Bernice Kings knows we are capable of) believes that it is, clearly, theoretically feasible to do better. Genuine and real listening and true coproduction from lived experience perspectives would be a start. It's yet one more thing that's still mostly not currently happening. Not in the reality I inhabit. We'll either get there or we won't. It's a choice. And it's not up to me to the make that choice. It's up to my fellow humans to choose to do so.

...


Article photo is adapted from the work of youssef naddam on Unsplash.


Sunday, February 5, 2023

Inclusion Or Tokenism? Response to Washington State's Attempt to Legally Codify Lived Experience Inclusion

Recently a colleague sent me the text of a proposed state legislature bill in Washington State with a stated purpose of increasing access and representation in policy-making processes for people with direct lived experience. And asked me for my thoughts.

Here is the link to the text of bill - HB 1541

I'll admit I haven't done a thorough deep dive yet (and if any group in Washington State wants to pay me to do that, I'm right here and open for business). This is a first initial impression without talking to the people who drafted this or to the stakeholders in the state itself.

Here's a brief rundown of the main core aspect of the bill. The major legal change is that the bill calls for lived experience representation on any statutorily created (i.e. a state legislature bill requires such a group to be formed) or statutorily mandated multimember task force, work group, advisory committee, board, commission, council, or other similar entity tasked with examining policies or issues that directly and tangibly affect historically underrepresented communities.

If two or fewer underrepresented populations are directly and tangibly affected by the specific issue or issues that the statutory entity is tasked with examining, at least two representatives from each directly impacted underrepresented population must be appointed to the statutory entity.

If there are three or more underrepresented populations directly and tangibly affected by the specific issue or issues that the statutory entity is tasked with examining, at least one person representing each directly impacted underrepresented population must be appointed to the statutory entity.

There are some other parts of the bill but for now this article will focus primarily on this component. 

My Thoughts and Concerns 

1) Token Representation

It's nice to see the bill calling for more that just one token individual, but these government committee are usually in the rage of 10-30 members. Only protected 2-6 or so of those slots is not true empowerment for Expert by Experience (EBE) perspective. It is terrifying when 80% of the room is often against you to begin with and you're only 20%, with no guarantee that anything you say has to be respected or truly listened to.

Yes, the bill also has language aspirationally asking for the lived experience voice to be centered and prioritized, but there's no legal protection for enforcing that aspect in the bill. 

True leadership would be centering lived experience as the empowered discussion leader, not just the one or two chairs in the corner. As one example, included below is a case study of a recent Washington government committee with only 20% Expert by Experience representation and a vast amount of what I and my peers would strongly disagree with as policy recommendations. I don't know the five EBE members or anyone else directly involved. It is just my initial outside analysis. 

I would love to keep developing more such case studies with more structured formal analysis and direct input from involved stakeholders and lack the support and funding of the broader behavioral health community to pursue such work. 

2) Government Committee and Working Group Reports Often Don't Guarantee Accountability For Further Change

We have so, so many examples of the hundred page government report that did little to actually on-the-ground shifts in resource allocation, policy, cultural opinion, etc. Sometimes they do help, but it's something to note. 

3) Who's Payed For This Work and Who Isn't

Committees are labor. For government employees, such participation counts as part of their salaried job duties. For researchers and professionals, participation falls short of that, but they at least typically have salaried jobs that provide middle class or higher lifestyles. The Expert by Experience does this labor also for free, often while living in poverty conditions. It's laughably and profoundly inequitable for some people to get paid to be there as part of their job while asking those with the least to contribute without pay.

4) No Guarantee Lived Experience Input Will Be Respected 

The bill, in the introduction, mentions that.. 

"People with direct lived experience with a particular issue are experts in their own lives and experience and are best equipped to find solutions to those issues. The legislature finds that when underrepresented populations are included in policy decision making around issues that directly affect them, the solutions put forward make a greater positive impact on those it seeks to help."

What the bill seems to fail to recognize is that there's a difference and a risk between true, respectful, co-creative inclusion (which does often result in greater positive impact), and disrespectful inclusion. As detailed in this report about peer support staff in medical settings, research finds that peer staff feel ostracized and poorly treated by non-peer staff. A recent study explicitly found that peer staff working in traditional treatment agencies are “co-opted,” reporting that the employment and supervisory circumstances of peer staff “can reasonably be construed as a powerful force encouraging acculturation into the cultures of the treatment organizations in which they work." Acculturation is a term meaning assimilation into to a different culture, typically the dominant one. Meaning that peers are forced to adopt the views and methods of the prevailing status quo. Thereby doing the exact opposite of the stated attempt - adopting some or most of the solutions brought forward by the views (and culture) of the peers themselves.

Final Initial Thoughts

I appreciate the underlying attempt here but still feel like this does far too little, and makes me wonder how much Expert by Experience consultation was done in drafting the report itself. 

To be not wholly negative, I do hope if this passes that maybe it can serve as an aspirational signal that perhaps prompts some true respect and cultural change toward true empowerment of Expert by Experience perspective. Perhaps some of the peer input provided by these individuals will actually being acted upon and put in place. That being said, I have rightful and evidence-based reason to worry that this does very little except codify tokenism as legal state policy. Is that any better that outright full exclusion? It almost feels worse, as it gives the performative veneer of appearing like inclusion has occurred, while in truth falling vastly short of the true inclusivity, empowerment, and accountability needed. 

As the report says, as potential system designers, the actual service users have the most important perspective. We are still not empowered to utilize that perspective, and I'm sad to say, despite what might be good intent, I don't see this legislation directly getting us any closer toward that goal.

Case Study of Lived Experience (Expert by Experience) on a WA Government Steering Committee

Given the proposed representation totals in the legislation, we can ask - will such work representation totals serve to advance peer policy preferences? One recent example we can look at is Washington's State Substance Use Recovery Services Advisory Committee (SURSAC). Here is brief context for the formation of the committee (source)...

"In April 2021, the state Supreme Court rejected a request from the state to reconsider its Blake ruling. Later that month, the Legislature passed Senate Bill 5476, reclassifying drug possession as a gross misdemeanor with fines up to $125. Per the bill, first and second-time convictions that occurred before the Blake ruling would be vacated in retrial and defendants referred to treatment programs.

The legislation also created the Substance Use Recovery Services Advisory Committee (SURSAC), also known as the Blake Committee, tasked with creating a plan for the 2023 legislative session."

Was Lived Experience Perspective Represented? Was in Centered?

This is exactly the kind of panel HB 1541 is targeting. Who is on this panel? In the references section below one can find a full list and how I chose to classify committee members. By my count, out of 25 members, the committee representation is...

Government (14)

Corporations (1)

Practitioners/Researchers (5)

Expert by Experience (5)

We can thus see that lived experience makes up only 20% of the voice in the room, versus 80% not Expert by Experience. Near as I can tell, this would also count as what HB 1541 considers to be sufficient representation. We can note that if such a committee chooses to use majority vote to pass a recommendation, the Expert by Experience contingent would need to swing a full 30% of the room that's not they themselves to get a vote passed.

 This looks, to me, like nothing less than pure tokenism. The one chair in the corner so the committee can say we, the Experts by Experience (EBE), were there, while still not possessing true power. Not being centered. Not leading the effort. 

I say that based on the experience of myself and dozens of colleagues and hundreds of committees with similar representation percentages or lower. Maybe this committee truly let their five EBE's lead, but countless examples have shown this isn't likely.

This is not the EBE people "leading".

What Does the Report Outcome Look Like?

SURSAC released their final report in December of 2022 (link to the report)

Similar to my discussion of HB 1541, this article is limited to rough initial thoughts from solely myself. I do have the capacity or resources to perform more exhaustive analysis, and would be happy to work with partners interested in investing in such analysis.

Here are some rough thoughts.

1) Rhetoric insisting that existing services are definitely and always helpful. No report of the harms and failures that occur when reaching out.

Recommendation 10 of the report mentions "The SURSA Committee recommends continued and increased investments in evidence-based diversion programs".

This completely fails to ask or acknowledge the many Expert by Experience critiques of how evidence is created in the health services. As was documented in a January 2023 National Institutes of Health report on ableism in research...

"Although 27% of U.S. adults live with a disability, only 10% of science, engineering, and health doctorate holders, and less than 2% of researchers funded by the National Institutes of Health, report having a disability. Inclusion is even lower among professionals with disabilities from underrepresented racial or ethnic groups in science, technology, engineering, mathematics, and medicine fields."

We know current programs are failing. Not always. But sometimes. And yet reports like SURSA continue to fail to acknowledge this and instead insist that help is definitely out there. I am continuing to work to show how and why that is a partly false narrative, and an early draft exploring that topic can be found here...

Article Link: The Hard Truth Of When We, Sometimes, Can Do Almost Nothing To Help

2) Rhetoric that services are "appropriate" - Health Hubs

Within recommendation 10, we see a recommendation stating these services should be made available in all regions as well...

ASAM-alternative SUD Assessments for youth and adults

• Syringe service programs for youth and adults

• Health Hubs for youth and adults who use drugs

• Detox/withdrawal management for youth and adults

• MOUD for youth and adults

• Outpatient treatment for youth and adults

• Ensure that long-term harm reduction-supported case management is available

One question I had is - what's a health hub? This is a policy that committee member Dr. Caleb Banta-Green, a researcher at University of Washington (UW), has publicly championed numerous times, including this op-ed article which was also referenced in a UW press release. Linking to press release as actual article is behind a pay wall.

Substance Use is a Health Issue, Not a Legal One – Op-Ed in the Seattle Times by Dr. Caleb Banta-Green

Press release quote: "A priority recommendation from SURSA is the creation of health hubs for people who use drugs referred by the newly created recovery navigator or other established programs"

This article used this link to define health hubs...

Drug User Health Hubs

From which this quote is of interest...

"The Drug User Health Hubs are expected to improve the availability and accessibility of an array of appropriate health, mental health, and medication assisted treatment services for people who use drugs, especially but not solely injection drug users (IDUs)."

Critical questions include...

1) Who decided what "appropriate" is? 

As myself and many in the disability rights and mad justice movement have noted for decades, our community has been locked out from that discussion and determination, leading to a profound and ongoing system of entrenched ableism.

2) Insistence on the treatment paradigm

This is yet another explicit reinforcement of the medical model over the disability model. Even though parts of the SURSAC report reference social determinants of heath at times, including a couple attempts at policy recommendations toward that end, it is clear that the bulk of the report is still heavily biased toward the medical model of "fix the individual" and "force the individual to comply with existing systems" while placing no true accountability on systems and external factors to themselves adjust to serve the citizen in need. 

3) Analysis of Hub and Spokes 2018 Model Championed by Committee Chair Michael Langer 

It's important to note that SURSA is chaired not by a lived experience advocate, but by a longtime government employee. They may or may not have lived experience themselves. But note that it's not the external Expert by Experience who is given the seat of power in the committee. At best, the chair takes a backseat, facilitator role who's job is to center lived experience. There is no protection for that under HB 1541.

For a look at the perspective Langer might bring to the table, we can look back to Washington's 2018 SUDS policy utilizing the "hub and spokes" approach. Michael Langer was office chief with the DSHS Behavior Health and Recovery Division at the time, and is quoted in this WA Governor’s Office overview article: 

What are hubs and spokes and how can they help fight the opioid epidemic?

Relevant quote:"The hub-and-spoke program is about networking, and it gets its name from the way it creates a help network within a specific community. There is a hub, which is a facility where staff are certified to administer addiction-treatment drugs such as Suboxone, and there are a variety of nearby spokes, which are other places a person might find help for opioid use disorder. Spokes within a community could include a residential treatment facility, a therapist’s office, drug court, a tribal medical facility or an emergency room, for instance."

As I read that passage, I note how all the spokes are not-designed-by-service-user approaches that are steeped in the medical model. There's no mention of peer support. No mention of advocating to fix social determinant of health issues. No lived experience input.  

It's exactly the kind of program that we'd hope HB 1541 starts to fix, but I've seen little to no acknowledgement that Washington State government truly understands why many Expert by Experience advocates are critics of much of what that quote about what Langer thought spokes should be at the time. 

I'm worried he and the rest of the community still don't understand. HB 1541 calls for training, but with zero true enforcement on who will train these individuals, and zero accountability for showing they've truly come to understand the ongoing harm lack of Expert by Experience inclusion has caused. 

Concluding Thoughts

All told, and to be clear I haven't gone through every policy recommendation in detail, but after a first dive into some of this I see an astounding amount of the same harmful paradigms demanding that we "fix the individual" and "adapt them to current systems", which is sometimes helpful and at worst harmful and abusive. 

I see no acknowledgement of past and ongoing systemic harms from supposed "help" systems. 

I see no acknowledgement of past and ongoing failures of existing "help" systems. 

I see only a scant minimum effort devoted to tackling social determinants of health. 

I would not, as an Expert by Experience individual myself, put full support behind this report. It's a complex issue criticizing systems that help some and harm others. It's a delicate and challenging task. I don't see this report rising up to meet that challenge, and I feel unrepresented in what the report says about my community does and doesn't need.

* * *

Can contact me at taylor.geomatics@gmail.com

Please consider donating to support this work. Never required. Always appreciated. 

Donate Link: https://ko-fi.com/socialrealitylab

* * *

Reference Notes

December 2022 SURSAC Steering Committee Report

https://www.hca.wa.gov/assets/program/substance-use-and-recovery-servics-plan-leg-report-2023.pdf


Categorization of  SURSA Committee Representation 

Source: Dec 2022 List of the Committee Roster

Government (14)

- Director’s Appointment, Committee Chair Michael Langer Thurston County

- House of Representatives, Democrat Caucus Lauren Davis Snohomish, parts of King (32nd District) - - House of Representatives, Democrat Caucus (Alternate) Jamila Taylor King, Pierce County (30th District)

- House of Representatives, Republican Caucus Dan Griffey Mason, parts of Thurston, Kitsap (35th District)

- House of Representatives, Republican Caucus (Alternate) Gina Mosbrucker Klickitat, Skamania, Yakima (14th District)

- Senate, Democratic Caucus Manka Dhingra King (45th District)

- Senate, Republican Caucus John Braun Clark, Lewis, Cowlitz (20th District)

- Governor’s Office Amber Leaders Thurston County

- Representative of Prosecutors Chad Enright Kitsap County

- Representative of Public Defenders John Hayden Clallam County

- Representative of Local Government Kevin Ballard Pierce County

- Recovery Housing Provider Sherri Candelario King County

- Outreach Services Provider James Tillett Spokane County

- Representative of Sheriffs and Police Chiefs Donnell Tanksley Whatcom County


Corporations (1)

- Representative of the Association of WA Health Plans Sarah Melfi-Klein King County


Practitioners/Researchers (5)

- Expert from Addictions, Drug, & Alcohol Institute at UW Caleb Banta-Green King County

- SUD Treatment Provider Christine Lynch Kitsap County

- Expert in Serving Persons with Co-Occurring SUD and MH Sarah Gillard Franklin County

- Employee Who Provides SUD Tx and Serves as Member of a Labor Union Representing Workers in Behavioral Health Field Addy Adwell King County

- Expert in Diversion from the Criminal Legal System to Community-Based SUD Care Malika Lamont Thurston County


Expert by Experience (5)

- Youth (1 of 2) in Recovery from SUD who Experienced Criminal Legal Consequences Hunter McKim Whatcom County

- Youth (2 of 2) in Recovery from SUD who Experienced Criminal Legal Consequences Kendall Simmonds Pierce County

- Adult in Recovery from SUD who experienced criminal legal consequences (1 of 3) Don Julian Saucier Kitsap County

- Adult in Recovery from SUD who experienced criminal legal consequences (2 of 3) Chenell Wolfe Grant County

- Adult in Recovery from SUD who experienced criminal legal consequences (3 of 3) Alexie Orr Okanogan County

Other Reference Material

Washing State Health Care Authority Project Page: State v. Blake: ESB 5476 and behavioral health expansion

Link: SURSA Committee First Meeting December 6th, 2021

* * *

 

Photo by Clay Banks on Unsplash


Wednesday, February 1, 2023

Fundraising Barriers at Square Zero

The Ask

My question is this - what we can do to better support what I've been calling Square Zero nonprofits?

What's a Square Zero nonprofit? It's a term used for the thousands of under-resourced groups and individuals who have a dedicated social good mission and also have no current capacity to go achieve it. Zero initial funding. Zero paid staff. Zero mentorship. Zero social capital. They aren't registered yet as a 510(c)(3) and they have no idea, help, capacity, or current ability to acquire a fiscal sponsor or establish their own 510(c)(3). They are not able to pay for the labor of grantwriting or other fundraising yet because, as stated, they are starting with zero funding.

I read a note today from a grantwriting consulting firm that said "nonprofits need to have many pieces in place before they start applying for grants" and "our company often turns down business if a nonprofit is not well positioned to receive grants." 

Where's the help on offer for Square Zero efforts who don't have the pieces in place yet?

I'm worried that it's rare to non-existent.

I want to make this issue more visible and respected. It is a major barrier standing in the way of propping up the grassroots underpowered communities participatory grantmaking is meant to support. 

I am also raising this question because I am representative who can speak on behalf of several advocacy efforts currently stuck in the Square Zero phase of their development. Included below is additional background on the specific situations I'm connected with that lead me to asking this question today. 

I appreciate you all reading this note and hope we can collectively work on creating solution pathways for this issue. 

Additional Background Context Material

I work in the field of disability rights advocacy with a specialty in working to elevate and empower lived experience voice into genuine co-creator, consultant and supported leadership roles in the design of health services.

I have 3-4 initiatives that are at the Square Zero stage of nonprofit development right now. I have dozens of key government, health service, and university stakeholders interested in the work. I have hundreds of potential lived experience consultants at the ready. None of the entities involved seem able or willing to offer capacity support for the needed work. The empowered systems refuse to directly support lived experience knowledge development. The marginalized communities are disempowered and often are forced to pursue the work without salaried pay and without needed organizational infrastructure. 

I myself am not paid for this work and have spent well over 500+ hours, unpaid, trying to develop these initiatives. I am disabled and struggle to find work roles that can accommodate my often misunderstood disabilities. I maintain survival living standards utilizing barebones social aid and with limited support from an oftentimes emotionally abusive family.

Both myself, and many thousands of individuals across the trauma survivor and disability communities, have spent years (decades for some) performing unpaid, exploitative labor related to advocacy, education, peer support, and conflict resolution. This is often done in opposition to the enfranchised system. A system that, when they do invite us to the table, almost always demands that our time be given freely and without support.

What are people like me supposed to do? I feel that there is no on-ramp currently on offer to enter the world of grant-supported advocacy except to get extremely lucky. We don't want the whole pie. We don't want to take the jobs of others. We just want to be given jobs and support ourselves, especially knowing that so much money (at scales of $500+ million at times) goes to efforts that our community has said, time and again, is not doing the best job helping us. And knowing that we could show funders why that is and how to do better if given the chance, trusted, and treated with respect,

* * *