“Good introductions should be considered part of universal design.“
Photo courtesy of Alex Tabony
“Employers are often focused on obtaining the ‘best and the brightest’ and have defined that, in part, as having a profile that typically PWD (people with disabilities) do not have because of missed developmental opportunities and/or non-traditional backgrounds for the position.“
Name or Anonymous:
Alex Tabony
Please share how you prefer to introduce yourself:
Call me Alex.
Here’s a little more about me. Since 1999, I’ve dedicated my life to help break the cycle of poverty for people disabilities and the economically disadvantaged. Employment is the key to a life of independence. I develop and maintain programs that go right to the heart of the issues and produce remarkable successes. My hat is off to those who take the challenge and I am so proud to be part of the process of transforming.
As Computer Technologies Program‘s Executive Director, I’m responsible for overseeing the administration, programs and strategic plan of the organization. Other key duties include fundraising and community outreach.
Your pronouns are:
He/Him
Current Job Title(s) and Organization(s) (if applicable):
Executive Director, CTP
Years in philanthropy on both the fund-seeking and fund-giving sides:
1-5
Number of years in the workforce prior to 2007, when there was a surge into social media?
23
Number of years in the workforce prior to 1990, when the ADA was passed?
6
Number of years in the workforce prior to 1977, when the federal Section 504 regulations were signed?
0
Large amounts of money gives people privilege no matter if they are aware of it or not and this creates a cultural divide that is not necessarily simple to cross in either direction, it seems.
Have you held any positions that make funding decisions and/or sets funding priorities?
Yes
Are you currently opening 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
Have you had any ongoing connections with other disabled/chronically ill/aging philanthropy professionals where you can support each other?
No
Have you felt it was difficult to build strong relationships with peer colleagues, superiors, donors because of communication barriers?
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?
No
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?
Yes
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?
No
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?
No
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
People are very receptive and positive and then forget instantly about the [accommodation] request.
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?
No
How have you learned from/found support for advancing disability inclusion from other marginalized communities that you’re a member of?
Honestly, I have not.
Although I have been part of various tech-related employment inclusion groups, events, etc., ultimately I find that they are not effective.
Employers are often focused on obtaining the “best and the brightest” and have defined that, in part, as meeting a profile that typically PWD (people with disabilities) do not have because of missed developmental opportunities and/or non-traditional backgrounds for the position.
Or the employer is desperate to hire people who are willing to work and do not care about superficial issues, “perfect” resumes, and thus become inclusive out of necessity rather than purposefully.
What has your most positive experience of being disabled/chronically ill/aging in your philanthropic work life been?
People engage more with my emotional presentation and find my jokes funnier because it helps them to relieve their tension.
What type of system changes or workplace policy in philanthropic spaces have/would you recommend, based on your experience of disability/chronic illness/aging?
Such a simple thing that would help a lot is to have a good system of introductions.
Most people I have met in philanthropy have been very nice but some are shy (social introverts) and somewhat tribal. Since there is already a discomfort for non-disabled people to know how to engage with PWD, doing good comfortable introductions would really help a lot and are often not done at all or done well.
If accommodations are required, explain them so that people can comfortably interact. For example, provide a tiny explanation of how to use an ASL interpreter.
Good introductions should be considered part of universal design.
What was it like to disclose your disability, chronic illness, and/or aging issue in your philanthropic work life?
I don’t like it at all since I prefer to just be a person with an idea I want to talk about and the focus not be on what I can or can’t do.
I try to make it funny at least as much for my own comfort as others. I can laugh at my own jokes one way or another and if I do get a real laugh out of a group, that is a good feeling that lasts for me. It is my way of taking something for myself out of the situation to go along with my discomfort which I feel forced into.
What was it like to hide your disability, chronic illness, and/or aging issue in your philanthropic work life?
It led to not talking to people and not getting anywhere.
People can’t generally know that I can’t see them or hear them in some situations, so I’m cut off from interacting since few people will put the effort into bringing an outsider into a situation who might be perceived as not wanting to.
What have conversations been like in your organization(s) about disability, chronic illness, and aging, both informal and official?
Our whole mission is disability so we discuss this daily for the past 45 years.
New staff people are always learning and it is not always possible to yourself into another person’s shoes if their life experience differs in some ways so significantly. It’s an ongoing but very positive process.
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?
Being poor, which is part of public benefits, means that you have some ingrained ideas about the value of money.
Those misconceptions make asking for what seem like impossibly large amounts difficult and stressful.
Large amounts of money gives people privilege no matter if they are aware of it or not and this creates a cultural divide that is not necessarily simple to cross in either direction, it seems.
What has it been like to request accommodations?
People are very receptive and positive and then forget instantly about the request. I rarely ask for accommodation and it is seldom offered. I’ve learned to fend for myself for the most part. I cannot realistically expect anyone to effectively accommodate me in a first-time setting. On a sustained basis I train people, however.
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?
I have always been a person who figures out how to get along with that I have at hand. Early on, I probably would have been better off asking but that was not my personality and I was too shy.
Can you describe any gaps you’ve seen between commitments to disability inclusion in principle versus practice?
I am very pessimistic in this area.
THANK YOU, ALEX!
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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