Sickle cell, sexual assault, and activism: How to turn adversity into victory (#85)

Highlights from this week’s interview

Jean 3:46

Jean asks André to explain what sickle cell is. 

André 3:55  

It’s a group of inherited red blood cell disorders that have mutated, are deprived of oxygen, and become rigid. These red blood cells are deformed, becoming shaped like a banana or sickle. The cells become sticky and hard, making them difficult to pass through blood vessels, and causing clots (called vaso-occlusion). 

Jean 7:03   

How does someone get it? 

André 7:12   

It is inherited. A child is born with sickle cell when they receive two copies of sickle cell genes, one from each parent. There’s a 25% chance of getting those genes from both parents. 

André 9:35   

There are hundreds of different hemoglobinopathies, hundreds of different categorizations of sickle cell traits. There's SC, there's SE, SD; a lot of them are regionally found, but SC is generally less severe than SS. I have type SS, sickle cell anemia, clinically the most severe.  

Jean 15:14   

Take us through the journey of a person with sickle cell. How many crises or hospitalizations have you had?  

André 20:32   

I would probably say 250 or more. I would sometimes be admitted into the hospital multiple times a month, maybe sometimes two or three times in a month. I had a stroke when I was two years old. 

Jean 23:16   

What about the need for narcotics for pain management? My sister (who had SC disease) would have to prove she was not an addict, or she would not have been treated. 

André 24:20  

I had a nurse from the Bahamas who said, “We don't give our sickle cell patients narcotics; in the Bahamas, we only give them Tylenol.” She basically said “You patients here in the United States are spoilt, and you just need to tough it out.” I’d never felt so belittled or embarrassed as a patient. 

Jean 25:20  

Sickle cell patients are predominantly Black; the association of narcotics with Black people is in the stereotypical mindset. When a sickle cell patient shows up for pain medication, there's always the question, do you need this much? Are you addicted? My sister used to say there's a difference between addiction and dependency. She was dependent on narcotics to function because her body was in a constant state of crisis somewhere. But she wasn't addicted. 

André 26:53  

We have socialized what diseases deserve what treatment. A lot of the anti-Black racist ideas that this country has honestly been built on rear their ugly heads in the medical field. Empirical research is that sickle patients are not drug addicts, and that we only use it when we have to, and that many sickle cell patients don't want to be on narcotics, but that's really the only way to get out of pain. My generation is trying to seek out alternative medicine, options like acupuncture, dietary changes to reduce our need for narcotics. But when we get to that point, we still need access to them.  

Jean 31:10   

Your bio mentioned you were working in prevention advocacy for male victims of sexual abuse.  

André 31:59   

I am, myself, a survivor of sexual assault. A lot of people believe that sexual abuse and assault only happens to women. But the issue is that a lot of men who are victims are terrified to speak up. The overarching theme is to empower the voices of men who've been victimized, and really allow them to know that they can tell their story if they choose to.  

Jean 37:02  

[Jean explains that she and her sister both have SC disease.]  She asks André if he ever had shame around having sickle cell; he says no. Jean says: I did. So, you came out with your sexual abuse. You didn't have to come out with the sickle cell. 

You've had hundreds of hospitalizations, you've had the chronic pain. And sexual assault on top of that. And out of all of that tragedy and horror and grief, comes you. I want to know how you survived and thrived anyway. 

André 39:09   

Diamonds are formulated in rough situations. In order to achieve greatness you really have to have some type of life experience. I walk in my authority as a sickle cell advocate, as a sexual assault advocate, because I know that nothing trumps the lived experience. That's how I envision it: I have to have some type of mess to have a message. 

I decided at a young age that no matter what I experienced, no matter what happens, I am not going to take no for an answer. I wanted to take advantage of every opportunity. So that's when I studied abroad in China. I became a Ronald McNair Scholar. And then I was able to go to Bangkok, Thailand, to present my research at an international research conference.  

And I tell people, don't self-select yourself out of an opportunity. If I wanted to do something and I get rejected at the front door, I'm going around to the back door. If I get slammed in the face with the back door, I'm going to go to the next house. 

Jean 46:56 

Jean asks André to explain what’s involved in advocacy.  

André 47:31   

I had to stop working because I would always get sick. I always wanted to be more involved in the sickle cell community, so I reached out to the president of the Sickle Cell Disease Association of America. They just had won a grant from a funding agency to train advocates. It's all about divine timing. She said, “Apply, and basically when you apply, you'll get it.”  

And so, here's the point, if you find a niche area as an advocate, you can find a way to really market yourself. Everybody knows that when they contact me, I'm going to talk about social determinants of health and health equity and the social impacts of sickle cell disease. So that's kind of what brings my worth to the table. That's why people seek me out. That's why I'm a good advocate. That's what I do. 

Jean 51:33   

That's magnificent. How can we provide for the social needs of  sickle patients and their families? 

André 51:43   

I believe as a social worker that housing is health care, I believe in transportation equity, I believe in a lot of those social determinants of health. You really have to provide social support in helping people get to their appointments. We have to find a way to equitably provide social support and transportation. If I don't have adequate housing, there's research that shows that my health care would not be adequate.  

Jean 53:17 

You focus on health inequities, and the social support that's needed for a patient.  

André 54:07  

A lot of patients are coded in their medical charts as being non-adherent, noncompliant. And you can't call somebody noncompliant if you don't know the reasons why. Most of the time, there are social barriers in the way of allowing them to be total participants in their health.  

Jean 55:40

Well, I'm inspired. This is obviously something that's close to me, personally and professionally. You have done our profession well, in terms of standing up for what it is that we do. And I just thank you for your time. I thank you for being here. And a shout out to your parents and your grandmother. 

I’ll end it on you. You stayed with it. And I am so admiring of that. You took a mess and converted it into a message that you're delivering very effectively. And I thank you for that.  

Jean’s afterthoughts

There are so many takeaways in this conversation with André. First, I hope you gained more information about the terrible effects sickle cell disease can have on a person's body. Sickle cell is poorly understood.  

Second, I want to note the terrible effects that sickle cell can have on a person's psyche. Because Black people are stereotyped as drug addicts and sickle cell patients are predominantly Black, just showing up in pain in a medical treatment facility makes a person suspect.  

Third, André’s spirit and thirst for life was just so impressive to me. He is the survivor of sexual assault as well as a person living with a chronic illness. Yet, as he said, he's never let that stop him.

When I talk with people who want to make a difference in the world, this is one of the first things I emphasize: your problems and challenges may be personal and hard for you, but you can't grow muscles without stressing them. And as he said, “You can't have a message without a mess.” We can all take note.  

I hope you gained as much from the discussion as I did.  

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André Marcel Harris MSW CHW

André is currently pursuing a PhD in Social Work at the University of Houston Graduate College of Social Work. He is serving his second term on the Rare Disease Legislative Advocates Advisory Committee and as President of the Association of Black Social Workers (NABSW) University of Houston chapter. André also serves on the Executive Board of the Sickle Cell Association of Houston and holds positions on several other advisory boards for sickle cell and rare disease stakeholders including Forma Therapeutics, NHLBI, and HHS. He is a proud member of Phi Beta Sigma Fraternity, Inc., and was recently appointed as the National Sickle Cell Liaison Director, a position that allows him to strengthen the social action interests the fraternity has in supporting the sickle cell community. Connect with Andre: LinkedIn Twitter @andreharris89

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Leading Consciously concepts and skills
covered in this blog post

• Test negative assumptions
• Consciously test negative assumptions 
• Check to see if you are making cultural assumptions 
• Bridge differences
• Address underlying systemic biases 
• Check for stereotyping tendencies, unconscious bias, and blind spots in your behavior, especially as a dominant group member 
• Conscious use of self 
• Build resilience through self-affirmation 
• Initiate change 
• Emphasize changing systems, not just individuals 
• Acknowledge small wins 

#SickleCell  #ChronicIllness  #Noncompliance  #MaleSexualAssault  #SurvivingAndThriving