Remarkable World Commentary Episode #83: The Hidden Costs of Advocacy

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In this episode of Remarkable World Commentary Donna names the often-invisible price advocates with disabilities pay to show up for their communities. She walks through four recurring drains on her livelihood: volunteering (giving away unpaid slices of her expertise while paid staff manage the volunteers), advisory committees (companies harvest lived experience from disabled members and give little back), free research participation (universities, colleges, and agencies expecting her knowledge for free, or offering Tim Hortons/Starbucks coupons instead of real compensation, sometimes guilt-tripping her that she “owes it to the community”), and free evaluation of draft proposals (including hours spent reviewing Canadian government Accessible Canada Act materials with little recognition or pay). Her call is blunt: stop asking for free labor and pay disabled advocates for their knowledge, skills, and experience.

She then shares the most personal hidden cost, retaliation for speaking up. After receiving the Apex cybersecurity scholarship, she raised concerns that Apex’s content and LMS were not fully accessible; in response, Apex pulled her scholarship and reimbursed only $200 CAD for an exam voucher that cost $390 USD. She closes with a letter from a desperate mother whose child is being bullied at school, urging parents not to sweep bullying under the carpet but to talk to teachers, listen to their child, and confront the issue head-on. The episode signs off with a warm “Happy April” and her standard invitation for listeners to write in.

TRANSCRIPT

Podcast Commentary: Greetings, Donna J. Jodhan, LLB, ACSP, and MBA invites you to listen to her biweekly podcast, Remarkable World Commentary. Here, Donna shares some of her innermost thoughts, insights, perspectives, and more with her listeners. Donna focuses on topics that directly affect the future of kids, especially kids with disabilities. Donna is a blind advocate, author, sight loss coach, dinner mystery producer, writer, entrepreneur, law graduate, and podcast commentator. She has decades of lived experiences, knowledge, skills, and expertise in access, technology and information. As someone who has been internationally recognized for her work and roles, she just wants to make things better than possible.

Donna J. Jodhan, LLB, ACSP, MBA: Hello, everybody. And I’m Donna J. Jordan, your host for the Remarkable World Commentary, where I get to solo on my podcast. And for this month, I want to talk about something that is very near and dear to my heart. It is all about the hidden costs of advocacy. Yes, there is a hidden cost to advocacy, and many of us don’t really realize it until we take the time to reflect and understand what it is all about. Okay, so what does it or what do I mean when I say that there are hidden costs to advocacy? First of all, let’s look at volunteering. Each time we volunteer. And I’m not saying that volunteering is not good for us. But every time we volunteer and in my case, I will let you know when I. Volunteer or each time I volunteer, it means that I’m giving away a slice of my livelihood, whereas I’m giving it away for free and I’ve been happy to do so in the past. Don’t get me wrong, volunteering has been an enjoyment for me, a pleasure and a privilege. But there comes a time when you volunteer a bit too much. You give away slices of your livelihood. And what really, really concerns me is that whereas I continue to give away slices of my livelihood, there are those who are cashing in on this because they get paid to manage volunteers. I don’t get paid when I volunteer slices of my life for free. Okay. Each time I serve on a committee, for better or for worse, committees are those entities where companies set them up because they really believe that these advisory committees, or whatever they wish to call them, are ways for them to gather and garner information from persons with disabilities.

Donna J. Jodhan, LLB, ACSP, MBA: All well and good, but what do we get in return? Do we get to see our name out there on the websites of those companies that have formed these committees? Or do we give away again slices of our livelihood for nothing? I think this has to stop. I think companies need to understand and realize that for whereas our advisory Committees are great. They do not benefit persons with disabilities in many ways. This is another hidden cost of advocacy. Okay. What about the free research participant. And this one really, really, really concerns me. When universities and colleges and agencies come to me saying, we’d like you to participate in a research. Sure. I’d like to participate, but what am I getting in return? Another hidden cost of advocacy. Most times, they cannot tell me what I get in return for my lived experience, my knowledge, and my skills. And it really does start to annoy me that they expect me to give away my knowledge for free through their research projects. Some of them have even had the temerity to tell me. Well, you know, you owe it to your community to do this. Maybe so, but maybe not. And I’m saying this because I really want those entities who continue to use research projects to garner information, to think about it.

Donna J. Jodhan, LLB, ACSP, MBA: Please don’t give us coupons to Tim Hortons or Starbucks. Pay us for our knowledge. Okay. How about free evaluation of draft proposals? I’ve seen several of these in the past year from several Canadian government departments. You know, they come up with the whole thing. Like, could you help us to evaluate our draft proposals for the a c e or a C a at the Accessible Canada Act? What do we get in return for spending hours to help these entities. We don’t get much. I can tell you that I have given hours and hours and hours of my free time with little or no compensation. I don’t need my name to be out there. I don’t need my name to be put onto a website saying one of our participants was Donna J. Jordan. I don’t need that. I need to be recognized for the knowledge and the skills and the experience that I have given to these entities. And then when one speaks up after they have seen something that is not right. Again, it’s a hidden cost of advocacy. And in this case, it has to do with the apex folks. I received a scholarship from the apex company to study cyber security. But when I spoke up and I talked about the lack of accessibility to their content, guess what happened? They pulled the scholarship from me and had the temerity not to pay me in full for one of the exam vouchers. They paid me $200 Canadian. Whereas the voucher cost $390 U.S..

Donna J. Jodhan, LLB, ACSP, MBA: That is another hidden cost of advocacy, because I dare to speak up. Not to be spiteful to the apex folks, but to want to work with them after. I’ve tried and tried and tried. But I will stand by what I have said. In the past, their content was not fully accessible. Their LMS system was not accessible. Okay, so Those are some of the most common pitfalls for advocacy. Hidden costs for advocacy. Okay. I want to end my podcast here by talking about one of the most common things that occur in our lives. And this one is a story that was sent to us by a mother who was really, really desperate. Okay. She was dealing with her child being bullied at school. This is one of the most challenging events in one’s life. And how do you deal with this? You don’t deal with it by just simply ignoring it or simply sweeping it under the carpet. As a parent, what you need to do is go out there and speak to your teachers, understanding what your child is telling you, why they feel bullied, and you got to use ways to confront this challenge head on. That is one of the most common events that take place in our lives. Your child being bullied at school. Okay. This is it for me for this week. I want to thank you for joining me on my Remarkable World Commentary podcast, and I look forward to talking with you again very soon. Take care and happy April.

Podcast Commentary: Donna wants to hear from you and invites you to write to her at DonnaJodhan@gmail.com. Until next time.

Donna J. Jodhan, LLB, ACSP, MBA
Global Leader In Disability Rights, Digital Accessibility, And Inclusive Policy Reform
Turning policy into progress for people with disabilities.