I Remember This: I Am Thirteen and in the Recovery Room After Spinal Fusion Surgery

Cover of Mythology by Edith HamiltonYou are flat on your back under a glaring light. The bed is hard. It hurts. You don’t move because it doesn’t occur to you to do so, it’s so far beyond you. Each part of you that registers – reports in, so to speak – registers through pain. You body is mapped as a topography of pain. No face or distinguishing characteristics. You are a ground-colored shape dotted with points of glaring, popping pain. Where your head aches on the stone-stab mattress, where the gravel of the sheet is under your arms, where it rasps all along the tube that snakes down your throat, to an unidentifiable pressure on your front, low down.
Your back. Oh. Your back is a barely contained thorn patch in a mad stabber’s arsenal.
You’re not alone. There are voices, professional ones. But no one is talking to you.
There is a nurse above you, meeting your eyes. Her head blocks the light. “You’re awake,” she says. “You’re in the recovery room.”
You make a sound. It sounds dreadful. The first sound Frankenstein made on his slab. The thought of the monster brings back your past, all there was before this light, this slab, this pain. And the face in your reunion with memory itself is: Gene Wilder in Young Frankenstein.

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Welcome to the Disabled in Development (DiD) Project

Disability in Development (DiD) Project: Telling Our Truth to Transform Philanthropy

Connect. Belong. Succeed.

Access icon in blue and whiteThe Disabled in Development (DiD) Project is seeking out non-profit staff who hold fundraising responsibilities, and development and philanthropic professionals already in the field – some for decades – for their constructive advice on how to put inclusion principles into practice.
DiD is our place to document advances in inclusion and to testify to ableist structural barriers that we encounter and that all-too often halt our career advancement or force us out. Your stories are important.

Quick Links to More Information

Philanthropy has been changing for the better over the past 2 years or so, when it comes to disability and inclusion. The numbers alone indicate dramatic need for change: Just 3% of philanthropy identifies as disabled and funding for global disability civil and human rights advocacy fell by 23% between 2011-2015.

Getting more openly disabled people at philanthropic tables is the right thing to do. But being at the table isn’t the goal. Our representation matters because of our wealth — of expertise, skills, and relationships. DiD’s goal is to make philanthropy more powerful.

We’re all stronger when we connect, belong, succeed.

To achieve that, DiD will help improve philanthropy’s understanding of what ableism is, and how it — not disability — causes exclusion and inequity. This will strengthen philanthropy’s capacity to fight ableism. Philanthropy needs disabled, chronically ill, and aging people in order to become a better, more powerful force for social change.  
DiD provides an accessible outlet for making disability more visible and less stigmatized in the philanthropic sector, increasing the sector’s access to our profoundly marginalized expertise.
Our successes deserve to be known and built on. Our advice should be heard. The barriers that we deal with are often embarrassing, sometimes humiliating, and just as frequently, absurd and infuriating. They make great stories. This is our time to tell them.

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The DiD Project Includes Disability, Chronic Illness, and Aging

Disabled, Chronically Ill, and Aging People’s Representation Matters in Philanthropy and Fundraising

Our expertise and our stories can transform philanthropy and fundraising 
Disabled people, chronically ill people, and aging people can be a powerful coalition in philanthropy. But stigma is also a powerful force that keeps us silent, invisible, and isolated from each other – some of us, for decades. I’ve been an openly disabled fundraiser in the Bay Area for 25 years and I want things to be better for the people coming up.
I want the many people who have quietly persisted in philanthropy and fundraising for years and decades to be included in the equity work happening now.
Telling the truth about work and life by telling our stories is how we connect, belong, and succeed in philanthropy and fundraising.

Do you work/volunteer in philanthropy, work as a development non-profit professional, or hold fundraising responsibilities in your non-profit senior-level position?

Do you also live with one or more disabilities, chronic illnesses, and/or aging-related issues? (With “disability” including learning differences, neurodivergencies, addiction/recovery, and mental health issues.)

If so, philanthropy needs you! Your knowledge is an inside track for how to put disability inclusion principles into practice in the philanthropic sector, as a workplace and social justice force for ending ableism.

Connect. Belong. Succeed.


Contact me!

How You Can Participate in the DiD Project

Here’s how you can share your expertise and experience through Disabled in Development:

First Steps:

  1. See if it’s for you: Check out the process (below), preview the questions.
  2. Send questions or confirm with me via the Contact Form below: 1) that you’d like to participate; 2) how you’d like to be compensated (info below); 3) your decision about anonymity; 4) that you accept the Agreements.
  3. I email you a link to a Google doc that only you and I will have access to, where we’ll complete your interview/story.

Then:

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Compensation and Agreements Between You and the Disabled in Development Project

Agreements:

  • I’ll be grateful to you and, as a gesture of thanks for your time and expertise, I’m offering $40 to you through PayPal, or an Amazon gift card, or a contribution in your honor to the organization of your choice.
  • None of your answers to the questions below will appear without your permission in anything I post publicly.  
  • You can participate anonymously and use general descriptions for Job Title and Organization, for example.
  • You’ll provide selected specifics at your discretion, rather than try to convey your entire history or the entire details of a situation.
  • You won’t share any information with me that’s connected to an administrative or legal case that you’re involved in and that’s open.

Preview Sample Questions

Want to see a sample of the DiD’s All About You and All About Your Experience sections? Of course you do!

REMINDER: You control what you share. We communicate privately and nothing goes public without your permission.


The ALL ABOUT YOU section gives context for your stories section. Most questions can be answered with Yes, No, N/a. Longer answers are welcome but not expected.
Name or Anonymous:

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My FEDup™ Rant: I Have Feelings About My Body Being Regarded As a Tear-Down in Your Genetic Gentrification Scheme

A composite image of a color photo of the author at 5 years old: a blonde, white girl in a rainbow skirt and vest, and a purple sash with INGRID in gold glitter, clutching a diploma and bookbag. Above her is a CONDEMNED banner graphic. To her left, a sign reading Danger, Biological Hazard; to her right, a vintage sign of a strong man on a field, Only HEALTHY Seed Must Be Sown! Check the Seeds of Hereditary Disease and Unfitness By Eugenics

 

I’m FEDup with feeling like my feelings aren’t really essential components of conversations about bioethics.
About a year ago, in the midst of a cross-disability Human Genetic Engineering webinar that I was a support staff person for, one (not all) of the panelists named several disabilities, some congenital, as examples where you’d want HGE to be available. One of the conditions named was muscular dystrophy, the umbrella term that my own unnamed disorder falls under. I took the panelist’s choice to name each to mean that they were conditions that are particularly undesirable. There was a vague mention of parents opting out of children who have these specific conditions. (I’m in favor of enthusiastic consent for all parenting, including the parenting of disabled children. It’s the singling out of only certain children that needs to be addressed very carefully.)  
I had some feelings about that, which I have since translated into the image of the tear-down in the gentrifying neighborhood. I explained my feelings in the Q&A – though I didn’t have questions, really — and then I felt afterwards like I’d made it weird. It was a murky boundary thing; if the panelist had mentioned his own disability rather than mine, I might have disagreed but I wouldn’t have had such an emotional reaction.
It may not be a terribly marketable skill but exploring and describing the emotional landscape of being my particular type of disabled person is what I know how to do, though I usually think fiction — #criplit, specifically — is better suited to the task than anything expository. There is emotional terrain in the development of bioethical and other disability policy, law, and research — as there is in the policy, the legal analyses, the studies, and all of the work-product items — and it deserves representation. That’s what I’m trying to do here.
I can do it because of privilege: I’m white, have a college degree, and the time/money to write this; this all adds up to a baseline expectation that the world will agree my feelings matter. I also grew up in a family that, however messed up, was an oasis from ableist BS and — most importantly — treated my feelings as valuable and in need of care.

But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied.


One of the webinar folks sought me out at another event subsequently and was kind enough to say that my comment had value. But the episode has stuck with me, I think, because it was a last straw kind of thing after nearly five decades of being bombarded with messages from random childhood people, telethons, and the famously rational that I will never, ever be envied. I was simply not prepared to get hauled into a disability justice-branded webinar as Disaster Exhibit A while I was sitting at my DREDF desk.
If I could respond to the panelist, here’s what I’d say: “To be very clear: Difference in emotional reactions is a good thing, I’m not pleading for conformity here. But I have a problem when feelings aren’t identified as such. I get it — muscular dystrophy is frightening or repugnant or whatever to you. Some folks with MD hate it. But it’s not a given. It’s a feeling. And you presented your feeling as a fact. You’re regarded as a bioethics expert, plus you’re disabled yourself. That’s why you harrowed up my feelings so deeply.”
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