In August 2024, I joined a webinar called Neurodiversity and Volunteerism from the beach. I was on a family trip but knew that attending live would be an amazing experience. I was right! Sarah Philippe introduced me to fresh ideas and showed me ways to create more inclusive volunteer opportunities. Best of all, I got to show my two-year-old niece a little slice of Auntie Jess’ work.
To be honest, before that webinar, I hadn’t taken time to do meaningful learning about neurodiversity. As someone who speaks about self-advocacy for leaders of volunteers, I knew it was time to learn more. I read a few articles on the topic like this one from Harvard Business Review called Neurodiversity as a Competitive Advantage and this one from the Canadian Centre for Diversity and Inclusion.
I was so grateful that Sarah agreed to chat with me about her experiences. As you read these excerpts from our conversation, I hope you appreciate, as I do, the value of continuous learning and growth. I’m grateful to Sarah for being part of my learning journey.
JPP: Thanks Sarah for taking the time to chat with me! I loved your webinar.
SP: I’m really glad you enjoyed it!
JPP: Let’s start today off by learning about your career journey. How did you become a volunteer engagement professional?
SP: There’s a bit of a backstory to that... I grew up with high school students from all around the world spending time in my home. Our family volunteered as hosts and my mom was a Regional Director for the organization.
JPP: That’s very cool! Where were the exchange students from?
SP: So many different places: Slovakia, Turkey, Indonesia, Pakistan, Bangladesh, Tunisia, Egypt, Germany, Brazil, Argentina, China, South Korea, Japan… I think I’m missing a few countries… But I do like to joke that I have over 25 brothers and sisters!
The students from Muslim majority countries came on a scholarship called the Kennedy-Lugar Youth Exchange and Study (YES) Program, which started after September 11th.
While finishing college, I worked for the student exchange organization and at Macy’s. Both of these jobs set me up with the right skills for working with volunteers. One day, I saw a job posting for a volunteer management internship at the Irish fair of Minnesota. I applied and got it!
JPP: Of course you did! So what kept you growing in the sector?
SP: Well, that was around the time I went through a breakup. I kept asking myself “What do I want to do?”
I had always loved the history museum and decided to volunteer there. I got to know the Volunteer Coordinator really well and she encouraged me to check out the CVA (Certification in Volunteer Administration). She also recommended the Volunteer Leadership Impact Training series from MAVA- which I took twice!
JPP: She really mentored you!
SP: Yes, she did! She said I was the first person she met who wanted to explore this career in leading volunteers. So, she was happy to take me under her wing.
JPP: Okay, so I want to talk a bit about self-advocacy next. While we were setting up this conversation, you mentioned that you have had to advocate at work for accommodations around being neurodivergent and for accommodations related to chronic illness.
How have you approached self-advocacy at work?
SP: Over the years, I’ve learned two important things:
The ADA (Americans with Disabilities Act) is quite limited.
Your self-advocacy success depends a lot on your direct manager.
JPP: Tell me more. Let’s start with the ADA.
SP: The ADA does certain things really well like requiring new buildings to be accessible for people with different types of disabilities, but it really doesn't do enough in the workplace.
When it comes to workplace accommodations, employer requirements are vague and up to interpretation. So, it's really easy for an organization to say that your accommodations disrupt the running of business or your accommodations mean they have to hire another person to do the job.
JPP: Could you share an example?
SP: Well, it happened to me when I worked at a local hospital. I had to be onsite every day and the accommodation I needed was a start time of 9:30am.
The hospital said that was an unreasonable accommodation because many volunteers started their shifts at 8am.
JPP: But this is a hospital that is open 24/7, right?
SP: Yes. And some volunteers had shifts starting at 6am. Some had shifts starting at 10am. Some had shifts starting at 2pm.
It really depended on their role.
JPP: In your role as a staff member, were you expected to be hands-on with every volunteer at all times?
SP: Not at all! Staff partners like nurses and the guest services team were volunteers’ main contacts. The program was decentralized, like most good healthcare volunteer programs.
JPP: And there were no major problems when you came in at 9:30am?
SP: Zero. The department grew by 270%. I never had performance issues while working there.
A start time of 9:30am was something I needed to stay healthy, but I was made to feel like I was asking for “special treatment”.
What was really hard was hearing snide remarks from co-workers. Even though they worked at a healthcare institution, they were unaware of invisible disabilities and acted so ableist.
JPP: Interesting… where I live in Ontario, Canada, we have something called the AODA (Accessibility for Ontarians with Disabilities Act). Every employer (from the public, non-profit, and private sectors) with one or more employees must provide accessibility training to employees, volunteers, and contractors.
I’ve taken the training several times and it does provide an overview of invisible disabilities.
SP: I don’t think this type of training is required in the US.
JPP: That’s so sad. So, would you say that for your position, hospital leadership essentially wanted a butt in a seat at 8am?
SP: Yes. They told me it was in case there was a volunteer-related emergency. Which honestly, could also happen in the evening after the whole volunteer department had gone home.
JPP: Wow, that's frustrating. Did you talk to a lawyer?
SP: I talked to five employment lawyers who are like, “Well, I don't deal with accommodations.” They focused mostly on terminations and contracts.
I felt so powerless and my self-esteem really took a hit.
JPP: That’s horrible and you deserve better.
SP: Leadership “accommodated” by suggesting that I take on a different job within the hospital. I asked if it was in the volunteer department, and they said no.
My professional background and knowledge is in volunteer engagement, I have my CVA, and I’m very active in the field. So, I’m still looking for a job in volunteer engagement.
JPP: So how do you approach disclosure in your job search?
SP: At interviews, I tell them, “I have a disability. I'm neurodivergent.”
It’s hard but I don't want to go through an experience like the one at the hospital again. It also means I haven't gotten hired because employers see me as being “too difficult”.
JPP: When you’re job hunting, what are some accessibility green flags you look out for?
SP: A few things:
Flexible scheduling- especially around start time.
Opportunities to work remotely or hybrid.
A supervisor who sees my knowledge and experience, not just my accommodation needs.
Team members who are willing to meet me where I am and connect with me about my accommodations respectfully.
A living wage. It’s sad that many of us in non-profit can’t afford to live where we work.
Healthcare benefits. Which are incredibly important when you need care as someone with a disability and chronic illness.
And, a clear and equitable PTO (paid time-off) policy. I can share an example of how a PTO policy hurt me.
JPP: Yes, please tell me more.
SP: In America we have federal holidays like Christmas, New Year's, July 4, and Labor Day. And if you work any of those days, you're supposed to get overtime.
I was working at a healthcare facility where the volunteer office was closed on those days. I could not go to work if I wanted to.
My manager referred to the PTO policy, which stated that it was my responsibility to ensure enough PTO for these mandatory holidays. To me, the policy was ableist and discriminatory.
JPP: That’s horrible. You mentioned earlier that self-advocacy success depends a lot on your direct manager. What do you mean by that?
SP: As a manager, part of your job is to help ensure employees have tools they need to meet their goals. I've had a lot of experience with managers who are promoted up and don't actually get leadership training.
When hiring, they don’t know what the accommodation process is like and HR doesn’t provide much support. So, in my current job search, I ask prospective managers during interviews what their accommodations processes are.
JPP: Have you had a manager who was supportive with accommodating your needs and receptive to self-advocacy?
SP: Yes, my manager at Macy’s was excellent. I was getting negative attendance ratings because I called in sick more than the average person. He was under pressure to reprimand me, but he had my back.
He worked with me through the FMLA (Family and Medical Leave Act) process for intermittent leave. He did the research and knew that I would not get approved since approvals are only granted once employees have worked for least a year.
Because we had started the process, there was medical documentation of my disability. Instead of taking the easy way out, he figured things out and worked with HR to make them happen. This showed that I was not getting special treatment when they adjusted my attendance points every quarter.
He shared his power with me and said, “Sarah should be here. She’s a good worker.”
JPP: I love that. Instead of being stuck in a scarcity mindset, he found room for abundance and inclusivity.
He saw you as a full human being and not just a walking set of skills and needs.
SP: Yes, he knew me as a human, not just a neurodivergent worker with a chronic illness.
Jessica, you’re making a good point about scarcity mindset. It pits us against each other and helps people hoard power.
One thing I’ve done is look at volunteer manager jobs I didn’t get. When I look at who’s hired instead, if it’s a person of color, I remind myself to pause and celebrate.
I remind myself it’s good to have a different kind of voice in this field because in general, we are so homogenized. The fact that most volunteer managers are white women has stagnated our work.
JPP: In general, it takes an incredible amount of privilege to work as a leader of volunteers! The reason I could work in the nonprofit sector for so long is because I have economic privilege through a partner who works in finance. When I combine that with being heterosexual, light-skinned, fluent in English, and well-educated, my privilege is immense.
Have you heard of the Wheel of Power and Privilege? It’s something that’s helped me unpack my own relationship with privilege, especially in the context of having a chronic illness and being Chinese Canadian.
SP: No, I haven’t. What is that?
JPP: The Wheel of Power and Privilege I’ve used is very specific to the Canadian context but was inspired by a resource from Sylvia Duckworth. It’s a wheel with different slices, representing various characteristics a person has, like gender, wealth, and neurodiversity.
Each slice is broken up into different parts. For example, wealth is broken up into rich, middle class, and poor.
SP: I think I’ve seen something like it and will need to take another look. From what you’re describing, it sounds like it considers intersectional identities. For me, being neurodivergent and having a chronic illness means I have a different combination of needs from someone who might only have one or the other.
JPP: Are there any resources you would recommend for learning about neurodivergence?
SP: Yes, a book! There’s a neurodivergence advocate out of Australia, Sonny Jane Wise, who wrote We're All Neurodiverse: How to Build a Neurodiversity-Affirming Future and Challenge Neuronormativity.
It talks about how white supremacy and capitalism are involved in society’s understanding of neurodivergence and disability. This is why, when I did my presentation, I talked about neurodiversity, not neurodivergence.
I explained how volunteer managers can practice in a way that is more inclusive of neurodivergent volunteers. But, I also shared how the work would make things more inclusive for everyone.
JPP: I’m putting that book on my list now! Thanks!
SP: I also actively update a Google Doc with great resources- you should check it out: https://docs.google.com/document/d/1jtbSVmIaALrdvOOlLMJ3OGy9iDxvQpNJm9AlM0McKQk/edit?tab=t.0
JPP: Thank you! I’ve bookmarked it on my browser!
As we wrap up, what advice would you give around self-advocacy?
SP: I encourage everybody to think about their own neurodiversity, self-advocate for their needs at work, and give themselves grace. Even if you are neurotypical!
For example, if you need two screens to do your job, you should ask for and get them! It’s not “special treatment”. We should all be able to access accommodations to support how each of us works best.
JPP: You are so right! Thank you again for taking the time to connect. I really enjoyed getting to know you and learned so much from our conversation.
SP: You’re very welcome. It was great to talk with you too!
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