Thread by @usnehal

Truth that makes me 😖 — stop disparaging those you claim to “serve” in order to claim a superior savior status. This happens across the board, whether words used for communities of color or those with disabilities. These communities & individuals have strengths & resilience.

https://twitter.com/mclemoremr/status/1175281180343595009

“Disability tourism” or the more shocking term “patient porn” is how stories are appropriated by and narratives controlled by

those seeking the money/funding

for these organizations’ finances & agendas

in ways that disrespect, dehumanize, rob agency

researchgate.net/publication/26…

“The sharing of experiences through stories by individuals who self-identify as having "lived experience" has been central to the history of organizing for change in and outside of the psychiatric system. However, in the last decade....”

“....However, in the last decade, personal stories have increasingly been used by the psychiatric system to bolster research, education, and fundraising interests. We explore how personal stories from consumer/survivors have been harnessed by mental health organizations...”

“We explore how personal stories from consumer/survivors have been harnessed by mental health organizations to further their interests and in so doing have shifted these narrations from ‘agents of change’ towards one of "disability tourism" or ‘patient porn.’"

“We mark the ethical dilemmas of narrative cooptation and consumption and query how stories of resistance can be reclaimed not as personal recovery narratives but rather as a tool for socio-political change.”

Reminds me this..

Because why are you asking for that money?

It is from a claim that you (with your superior knowledge and skills) can “heal” some would/hurt/harm

But can you REALLY?

Or is your very framework one of harm by your lack of respect for those you are describing in your grant?

This is done ALL the time to SO many communities

Communities of color

Those w/ disabilities

Those w/ mental illness

Vs what @lizzo describes in her powerful video on healing, healing together

Many organizations & academics seek to maintain control over funding

for selves

One funder that gets it right is @PCORI because they are serious, committed, consistent, authentic in ensuring community members and patients are at the table every step of the way: from informing what research questions asked to participant recruitment to how results presented

On other hand, the excellent work on that, ensuring patient voice meaningful included (not merely token)

creates a LOT of documentation requirements

to ensure compliance

that means the smaller, less resources organizations may not have bandwidth or resources for that

The answer, one may think, is to have big academic centers with capacity and resources and experience with grants to support smaller community organizations. There are a few good examples of that and some very specific funding like from @RWJF

rwjf.org/en/library/fun…

@RWJF offers excellent advice on building a team for authentic, respectful partnership

It is about RESPECTING the knowledge, relationships, skills, each brings

NOT exploitative

interdisciplinaryresearch-leaders.org/building-a-tea…

That is rare. To my 😖😡😱🤮

Repeatedly, in multiple non-profits, academic orgs, community health delivery orgs

Actual reality is

Treating human beings & communities like “turf” to claim sole ownership of

Chase off anyone else from space

Maintain control of funding

For self

As of that is not bad enough, as @mclemoremr points out in her tweet I reshared

the way that control of 💰 💰💰is maintained

is through a savior mindset

that uses disparaging and harmful language of those who are too ..something (weak, uneducated, primitive)

And when I have been in many of these settings

that get vast amounts of public or private foundation💰💰💰

Hold galas with LOTS of photos of black & brown faces or pictures of homeless or children on the slides

Well, take a look at their

PERFORMANCE/OUTCOMES metrics

😱😡

Any organization taking 💰💰💰 on behalf of a community

NOT delivering OUTCOMES

well, in developing countries we call that

FRAUD and CORRUPTION

why do self avowed saviors get a pass?

These are precious & constantly under attack resources

that BELONG to community

NOT to you

Just yesterday was observing presentations of different countries’ health systems in a fairly progressive setting

and when were the only times words like fraud and corruption were used by students?

to describe African or Latin countries

In fact

reuters.com/article/us-usa…

Also this in U.S. on fraud & abuse

You don’t need to go to Africa or Latin America to find fraud & abuse

In fact, follow the 💰💰💰 in some seemingly esteemed institutions & you will be

😱😡🤮

Let’s STOP with narrative crime is black & brown

marketwatch.com/amp/story/guid…

@threadreaderapp please unroll