Why more than 100 years after its discovery has so little progress been made in the name of Sickle Cell?
Why can’t we get any solid spokespersons, notable ambassadors or high-profile advocates?
Why do most carriers of Sickle Cell, after informing someone unfamiliar with the disease of their own experience, do they hear, “Oh doesn’t T-Boz/the girl from TLC have that?”
Why is there such a stigma surrounding the illness?
Why have so many carriers of Sickle Cell Disease, who’ve had pain episodes, had at least one terrible experience in the ER or with medical professionals?
For many years I was naïve about it all. Like many, I attributed our lack of progress directly to lack of awareness and the negative experiences of carriers to previous not-so-pleasant experiences of medical professionals. But after I organized a team of fellow students and embarked on a mission to raise the awareness of this illness that affects so many americans, particularly Black americans (and a minute percentage of non-Black people of color) I was met with a lot of blank stares, hands in pockets, politically correct denials and pleasant no thank yous.
Many companies told us they already had their agendas, one responding to our sponsorship request with a pleasant “we don’t do that, our focus is on women and a few issues of minority communities” and blah blah blah. Wait. But Sickle Cell is an issue of the minority community. Honestly, that was the best answer we got. All other denials and nos were some version of “What? Sickle Cell? What’s that? Uhh pass.”
Curating community support wasn’t the easiest either. Most of the folks who willingly dipped into their pocketbooks simultaneously noted the way in which Sickle Cell Disease affects or has affected them in the past – always a close friend or relative with the trait or disease. I even had to persuade on-campus organizations to sponsor, host or plan Sickle Cell awareness related events and I’m 100% sure they only said yes out of obligation because I was a member.
The fact is no one is checking for Sickle Cell. Awareness is still incredibly low, research isn’t much better and the stigma surrounding the illness is getting worse not better. Why? Why when we are making breakthroughs for other illnesses, including illnesses that affect a lot less people, are we still struggling to get everyone from the federal government on down to our next-door neighbors to care about Sickle Cell Disease and the people that it affects? What’s the problem?
The problem is the Sickle Cell community–in part.
Anyone who’s been an advocate for this community for any decent amount of time can list a slew of issues and problems. Fingers can be pointed and blame can be placed. We can talk about who’s not doing what and what we need more of and less of. We complain and we share our stories of pain, physical, emotional and metaphorical.
The bottom-line though, what all of these smaller issues lead back to are two main problems: racism and lack of leadership.
No radical, systematic change occurs without a movement and movements do not succeed without leaders and the Sickle Cell community doesn’t have one. What we have is a whole lot of smaller community-based organizations working with limited funds and menial resources doing the best they can to advocate and operate the best they know how. Having run one of those organizations myself and worked with the Sickle Cell Soldier Network, a human-run, working directory/database of sorts, I know what goes into successfully operating one. It’s not easy, it’s far from simple, it’s exhausting – mostly emotionally – and at times it can seem hopeless. So, I commend anyone who’s undertaken that feat.
There’s a lot of bickering and general disorganization here in the Sickle Cell community. Everyone thinks they know best, they have the correct answers to a test no one has been able to pass for the past 100+ years, including me. As far as I can remember we’ve never had someone step up and step into a leadership role, not on a national level.
Community organizer and fierce advocate, Phyllis Thomas, who founded the Sickle Cell Soldier Network with the ideal that we’re stronger if we work together, was making some serious headway. It was during my time working with her and the SCSN that I did most of my networking, and learning and advocating. I met and participated in conference calls with other advocates from all over the country, we made plans, we organized and most importantly we got things done.
Even though she didn’t necessarily want to be, Thomas was very much a leader, our leader. And as a self-described leader I have to say Thomas did an amazing job – leadership is complicated and difficult enough, leading leaders is even more difficult. Thomas was succeeding, that is until Sickle Cell Disease won the fight. Thomas is no longer with us and as such the SCD Soldier Network, though still standing, hasn’t made the same impact since she was the one at the helm.
Politics exist in everything we do. There’s really no escaping them, so the next best option is to learn to navigate them with as much genuineness and authenticity as we can. Without a leader or someone we can turn to for the answers, advice and to unite our voices, we sound like radio static or worse, the group of people behind you in the theatre disrupting the show. You can hear that they’re talking but you can quite make out what they’re saying, which makes it all the more vexing.
For example on the FIGHT Sickle Cell Twitter account we follow more than 100 SCD-related accounts, only one of which has over 2,000 followers (@SickleCellUK) and most of which are hovering somewhere around 100 or so followers, with the collective average of 221.5 followers. Imagine if we divided those followers among 10, 20 even 40 accounts and had social media gurus operating them for maximum effectiveness
Sure, we have the Sickle Cell Disease Association of America (insert a creative and telling combination of side-eyes, slow blinks and blank stares here).
I asked them what they do. They responded with a list of mostly unspecific accomplishments, the most recent one dating back to 2011 when they got congress to declare Sickle Cell Disease was important. I asked what had come of that and was met with radio silence. I asked for specificity regarding their official ambassadors and spokespersons and was again given only their names. I reached out to them via social networks for information on their actions as advocates and got no response.
Many “retweeted” and “favorited” my Tweets, liked my comments and questions and commended me for speaking up. In short a lot of people agreed with my concerns about the effectiveness and usefulness of the SCDAA. But when I turned the tables and asked in various ways why they themselves hadn’t spoken up I got a collective “We’re not really trying to piss anyone off.” In different words of course.
Our collective fear of pissing people off is why we have the second problem: Racism.
Why are we scared to tackle this issue? Afraid we’ll be accused of being overly sensitive or obsessed with race or racism. Is there worry of perpetuating the Angry Black Woman or Angry Black Man trope and fulfilling stereotypes? Is this why we proceed with such caution and tiptoe with trepidation around the issue of racism and how it directly impacts our lack of progress for Sickle Cell in america and around the world? Are we just naïve about how much of a factor race and racism is in relation to SCD? Those were all rhetorical. The answer is yes. Yes, yes to all of the questions and then some.
If the first thing you have to say in response is, “but Black people are not the only ones who can have Sickle Cell” you’ve effectively proved at least part of my point.
Yes, it’s true Blacks are not the only ones who can get Sickle Cell Disease. My knowledge of that changes nothing. It’s largely irrelevant in the grand scheme of things because the fact is that the overwhelming majority of those affected by this ravaging disease are Blacks and other people of color and that knowledge, that belief – that Sickle Cell is a Black disease has everything to do with the state of the Sickle Cell community, the lack of awareness, funding, research and treatment available to those living with SCD.
We shouldn’t have to emphasize that whites and other non-Blacks are affected by this disease just to get people to pay attention. This cause is worthy because it affects human lives and my quality of life as a human should be of just as much concern as a white person’s. We know it’s not, but it should be and this is why I am emphatic about refusing to use the “not just Black people” argument as a means to get the attention of the people in power.
What if it did affect just Black people? Would the cause be less worthy? Should we have less concern, less funding, research, treatment options and quality medical care? Then why keep bringing up the fact that it doesn’t just affect Blacks? If it’s merely for the purposes of encouraging all people to get tested, then fine. The problem is that hasn’t been the case with anyone who’s said that directly to me using that tired line laced with race propaganda.
I’m OK with all advocates and allies to any cause so long as they check their privilege at the door and are willing to discuss the issues of the communities they are advocating for with respect and deference, constantly seeking to understand the community and learn ways in which they can use their privilege for good without becoming a default (straight, white, male) savior. Making statements like “but not just Black people” lets me know they haven’t. Black people and other people of color using this as a claim to emphasize the newfound worthiness and importance of the SCD cause are naïve, unaware and just as guilty but in much more tragic ways.
Often times it takes people in power to be affected by an illness or situation in some way in order to kick-start a movement or be the catalyst for radical change. This is typically found in the form of a celebrity or other notable figure. This fact brings us back to that pesky R-word. I find that many people don’t understand or even know the definition of racism. Racism is not the same as racial prejudice. Racism is about power and two parts are required to levy such an accusation: discrimination or prejudice and power.
We can all agree that when we are talking about the long-standing systems and institutions here in america Blacks and other people of color are inherently lacking in the power and privilege departments. This is why leadership is so important as is tackling the race issue when fighting the good fight against Sickle Cell. One without the other simply won’t do.
I’m not getting into the conversation of whether or not Black people can be racist based on this definition. That’s another session of discourse for another time. My only goal is to shed light on two very real issues within the Sickle Cell community that are not discussed nearly enough. And this lack of discussion is effectively holding us back.
Until we are willing to tackle these two very real, pressing and substantial issues we’ll be climbing the wrong way up a moving escalator and fail to be taken seriously – the vexing murmur in the back of a theatre.