You’ve always deserved more. You have always been sharing your lives and your truth. You’ve never sugar coated anything.


As someone who has been an advocate for the disability and chronic illness communities, I’ve learned to teach by answering questions. I learn by asking questions. It’s been a real struggle to learn about being an ally without asking questions. For a long time, I didn’t understand why asking questions wasn’t the right way.


In my advocacy the people asking questions usually have no prior knowledge about what they’re asking about. No one knows what a J-pouch is. Most people don’t understand what an ostomy does. And I’d guess the vast majority of people don’t know what myelin is. I’ve always viewed it as my job to educate people because in the long run it will help me and those in this community.


But this isn’t the same thing. I’ve always known what racism is. I’ve always heard black people talking about how different their lives are. I had the background knowledge. It wasn’t your job to teach me and the rest of the world because we knew the problem and didn’t bother to learn the solution. In that regard, our jobs are very different. I see clearly now that in asking those questions I was showing you that I didn’t always believe what you were saying. I’m sorry.


I’ve used advocacy as a path to getting to know people and allowing them to get to know me. I used to feel so paralyzed, like I couldn’t get to know you if I wasn’t “allowed” to ask questions. Learning and listening and actively shutting up has been so much harder than I thought it would be.


It’s taken years for me to understand all of this. It’s taken a lot of very patient, wonderful people to endure my questions. You didn’t have to do that and I’m am grateful that you did. But I shouldn’t have asked that of you. I’m learning more now about how to have actual conversations with you, which sounds so rudimentary. Like, conversations? Obviously that’s the way to do this.


As a patient advocate, I’m often asked to speak on behalf of a really large group of people. I’m the only person who has IBD or MS that they know. And in that situation I’m very aware that I cannot speak accurately for every single person and am always honest about that. So why do white people always do that to you? Why do we ask you to speak on behalf of black people everywhere? Why do we always assume that the black community thinks, talks, and acts exactly the same? Because like me, you’re often the only black person we know. So many of us need to meet more people of color and learn about their lives. Read some books, white people. Damn.


Like a lot of white people across the country, I’m taking stock in my past actions and words. I’m identifying the ways that I can do better and then doing that. I’m working to be a better ally for you and to earn the right to hear your story. Brene Brown said, “You share with people who’ve earned the right to hear your story.”


I haven’t earned that from many of you. But I will.