Disabled in Development Project Storyteller #7: Judy Heumann

Philanthropy is not different than other fields. If there isn’t meaningful inclusion of disability across the organization, ableism is occurring.

Photo of Judy Heumann in her powerchair, laughing

Photo courtesy TEDX


Multi-colored hexagonsMy most positive experience was working at The Ford Foundation when they wanted to learn about barriers we face and what Ford needed to do to become more educated and inclusive.”


Name or Anonymous:  Judy Heumann
Please share how you prefer to introduce yourself:
It depends on the situation.  Typically Judy Heumann, sometimes Judith Heumann, Ph.D.
Senior Fellow, The Ford Foundation 2017-2018
I’m now building an online presence under The Heumann Perspective through social media platforms such as Facebook, Twitter and YouTube. This new project is intended to broaden and spur discussions on the intersectionality of disability rights.

Your pronouns are:
She/her
Years in philanthropy on both the fund-seeking and fund-giving sides:
40+
Number of years in the workforce prior to 2007, when there was a surge into social media?
40
Number of years in the workforce prior to 1990, when the ADA was passed?
20
Number of years in the workforce prior to 1977, when the federal Section 504 regulations were signed?
Not full time but 11.
Have you held any positions that make funding decisions and/or set funding priorities?
Yes, when I was the Assistant Secretary of OSERS 1993-2001, 2007-2010 DDS District of Columbia, 2010- 2016 State Department.
Are you currently openly identifying as disabled, managing a chronic illness, and/or dealing with aging issues in your workplace or with contracting companies, or in volunteer roles?
Yes
Do you have any colleagues on your team or in your organization who identify as disabled/chronically ill/aging?
Yes
Do any of the funding decision-makers who are your peers, or who you report to, identify as disabled/chronically ill/aging?
No

Multi-colored hexagonsFor most of my adult life I have spent a significant amount of my earnings on things like personal assistance. I have seen how these restrictions have limited many from pursuing employment or they have restricted their opportunities for fear of losing federal and state supports and then losing their job and not being able to get back on benefits.”


Have you had any ongoing connections with other disabled/chronically ill/aging philanthropy professionals where you can support each other?
Yes
Have you ever been provided with professional development, mentorship, and/or leadership training programs where you didn’t have to provide informal programmatic and/or physical access advising?
Yes
Have you ever experienced what you consider significant secondary stress, anxiety, and/or fear about meeting professional expectations because of disability/chronic illness/aging-related barriers and/or stigma?
Yes
Have you ever left a position because of disability/chronic illness/aging-related barriers and/or policies made continuing in the position untenable?
No
Have you ever been told in a work performance-related conversation with a superior that your presence is an inspiration to others, and/or that your presence in the workplace is itself remarkable?
Yes
Have you ever been physically touched, grabbed, patted on the head, had your assistive equipment handled without your consent by a peer, superior, or donor in a work environment? 
Yes
Have you ever struggled to participate in team-building exercises, workplace wellness programs, or other initiatives that were optional but not understood as presenting access barriers?
Yes

Multi-colored hexagonsMy experience with disability has always been helpful in my jobs and I am sure it has been a cause of my not being given other opportunities outside of disability-related areas.


Have you belonged to any other employee resource groups (ERGs), affinity groups for disabled/chronically ill/aging people? Any for other groups (parents, LGBT, etc.) Where you found support?
Yes
How have you learned from/found support for advancing disability inclusion from other marginalized communities that you’re a member of?
 By working with similar organizations and talking to people through workshops, or one to one.
What has your most positive experience of being disabled/chronically ill/aging in your philanthropic work life been?
My most positive experience was working at The Ford Foundation when they wanted to learn about barriers we face and what Ford needed to do to become more educated and inclusive.
What type of system changes or workplace policy in philanthropic spaces have/would you recommend, based on your experience of disability/chronic illness/aging?
Put a disability lens on all aspects of the philanthropy’s work from  physical, technology, HR, and then review the purpose of the organization from mission through grant-making.  Train staff. Dedicate staff to work on assisting the organization to ramp up in a reasonable time period with knowledgeable people.

Multi-colored hexagonsIn reality, we as disabled people are likely to have ableist views towards others with different types of disabilities.


What was it like to disclose your disability, chronic illness, and/or aging issue in your philanthropic work life?
I ride a wheelchair so no disclosure necessary.
What was it like to hide your disability, chronic illness, and/or aging issue in your philanthropic work life?
I couldn’t hide my disability. The issue of asking for accommodations was and remains an issue.  It never feels right. I always was grateful that I was in a number of situations where I could be proactive with people regarding accommodations.
How has your career been affected by the income restrictions imposed by public benefits systems and how do you feel about this particular experience informing/not informing a sector defined by economic privilege?
For most of my adult life I have spent a significant amount of my earnings on things like personal assistance. I have seen how these restrictions have limited many from pursuing employment or they have restricted their opportunities for fear of losing federal and state supports and then losing their job and not being able to get back on benefits.
What has it been like to request accommodations?
Embarrassing and humiliating.
What was it like to know there was an accommodation that would have made your work stronger but you were afraid to ask for it?
It was having to know that the lack of accommodation would limit my ability to participate like others. 
Can you describe any gaps you’ve seen between commitments to disability inclusion in principle versus practice?
Unless there is a person who truly understands what inclusion really is, putting it into practice cannot be successful.
In what ways has your experience with disability, chronic illness, and/or aging been helpful/a hindrance to your work and advancement?
My experience with disability has always been helpful in my jobs and I am sure it has been a cause of my not being given other opportunities outside of disability-related areas.
How would you describe the understanding of ableism within philanthropy, both as a workplace itself and in terms of seeking/giving funding?
In reality, we as disabled people are likely to have ableist views towards others with different types of disabilities.
Philanthropy is not different than other fields. If there isn’t meaningful inclusion of disability across the organization, ableism is occurring. If there is not intent to address these issues, the discrimination will not be addressed. 
People need to understand disability and how it is relevant to the work of their organization. Even if the area of philanthropy does not relate to disability –  and quite frankly, I don’t think this is possible – the hiring of disabled people and access must occur.
What’s it been like for you securing foundation grants and/or awarding them?
Frequently complex frequently because of the lack of knowledge on how disability applies to the funders’ objectives, unless the foundation has a clear interest in disability.
If you could give just one piece of advice to your younger self about being a disabled person in philanthropy, what would it be?
See if there are groups from the NGO community who meet to discuss development, learn on a regular basis who the influencers are in the philanthropic community, stay on top of what is happening in philanthropy. and go to meetings that are not only focused on disability.

THANK YOU, JUDY!


Multi-colored hexagons

Each Monday the Disabled in Development Project (DiD) features one disabled, chronically ill and/or aging Storyteller who shares their experience in advancing disability equity in philanthropy and fundraising.

DiD’s community development goal is to make philanthropy more effective and thus more powerful by centering more disabled people from multiply-marginalized communities. DiD Storytellers educate funders about ableism, celebrate advances in disability inclusion, and testify to the ableist structural barriers they’ve encountered, and that may have halted their career advancement or forced them out.

All Storytellers self-select questions to answer from an extensive list. All Storytellers are modestly compensated for providing their expertise on how to move disability inclusion from principle to practice in philanthropy and fundraising.

If you’d like to become a Storyteller or Field Ally, contact DiD Founder and Director Ingrid Tischer at ingrid@talesfromthecrip.org. Tell your truth about our disabled labor to transform philanthropy!

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