Color Blind: Perspectives From a Polka-dotted White Lady and Her Black Friend

 

L anL Made up

How many times have you heard a person say, “I don’t care if someone is white, black, green, or polka-dotted, it’s who they are on the inside that counts.” Some people like to believe that skin color doesn’t matter and go so far as to claim that they don’t even see color. Unless you’re legally color-blind, I find such statements absurd. A wise woman recently said, “Saying you don’t see the color of someone’s skin is like saying you don’t see if someone is missing an arm.”

That wise woman’s name is LaVerne Caples. LaVerne is the only African-American person in our local scleroderma support group. African-Americans represent a disproportionately large percentage of the 300,000 scleroderma sufferers in our country. Yet, LaVerne has never met another black scleroderma patient face-to-face. At our last support group meeting, LaVerne wondered aloud why we don’t see many African-Americans at our annual walk, other fundraisers, or our support group meetings. Me and my big mouth piped in and said, “LaVerne, I think we should write an article about this for my blog! Maybe it can be a means to encourage other African-American scleroderma patients to join our community.” Visions of LaVerne and I creating a music video while singing Michael Jackson’s Black or White lyrics danced in my head as I enthusiastically began to explore all the exciting ways we could reach our objective.

Recently, LaVerne and I discussed what we hope to accomplish with this piece. We laughed a lot and made some off-color (pardon the pun) jokes. I now sit at my keyboard shrouded in self-doubt. Really Lisa? What on earth made you think that you- a white lady living in an affluent suburb-should write an article having anything to do with race? Are you insane? Racial issues in our country are at a boiling point…why would you willingly step into this minefield?

I don’t have the first clue what it’s like to have black skin in our country. I can’t ever know how the despicable acts of enslavement, bigotry, Jim Crow Laws, rapes, murders, hateful slurs, and segregation that are so deeply interwoven into the historical fabric of our country impact African-Americans. I will never know how the racial violence that continues to poison our society affects every aspect of black Americans’ lives. However, I can understand what it feels like to scan a room and feel discomfort because no one looks like you. I know what it’s like to be judged by my appearance and for people to formulate preconceived notions about me based on what they see. I understand why LaVerne wants to come to a scleroderma support group and talk to someone who looks like her.

I already hear critics saying, “That’s reverse racism. Why should a black lady feel that she can’t identify with a room full of white people? ” It’s not that simple. Scleroderma is an autoimmune disease that impacts patients differently. In LaVerne’s case, her skin’s texture, color, and elasticity are being altered. I suffer from similar symptoms, but, due to the varied pigmentation levels in our skin, they don’t manifest in the same way. In our case, the color of our skin truly matters in the most literal sense.

Are you saying you and  LaVerne have nothing in common and can’t support one another, so you need to find her a black scleroderma patient with whom she can relate?,” asks the imaginary critic who I’m conversing with in my head right now.

No, that’s not at all what I’m saying, but consider this point. Have you ever had a terrible experience that was made bearable by connecting with someone else who had gone through something similar? Perhaps you endured a painful divorce? You still leaned on your married friends for support, but it wasn’t quite the same as the understanding you received from your divorced friends. It is human nature to seek comfort from those who have “been there, done that.”

LaVerne and I hypothesized why she’s the only African-American person active in our local scleroderma community, even though we know that there are other black-skinned scleroderma patients in our area. When LaVerne explains her scleroderma to other African-Americans, she typically hears that they already know about the disease because they have a friend or family member with it. Where then, are all these patients?

Is it a socio-economic issue? Scleroderma can take a devastating toll on one’s finances. It may be difficult for a person who is struggling to pay for their medical treatment to meet a fellow patient who is flying all over the country and being seen by the best doctors. Is it a cultural issue? Some cultures have the mentality that you don’t “air your dirty laundry in public.” Those who ask for help and support are perceived as weak. Is it the notion that if you don’t talk about something, it will go away?

The truth is, there are countless barriers that keep people in their proverbial silos. LaVerne and I aren’t going to change that. I know LaVerne will stay a part of our scleroderma community even if she remains the only black face in the crowd. She connects with her fellow scleroderma patients and derives comfort from them, just as they do from her. That said, LaVerne wants to extend an invitation to those suffering from scleroderma to step outside their silo. You can email LaVerne directly at: comfortableinmyblackskin@gmail.com to learn more about the benefits to  being part of a supportive community. If you live in Chicago, please consider attending the Scleroderma Foundation’s Patient Education Day on Saturday, October 10. This is a free event and there will be a session on African-Americans and Scleroderma.

Disclaimers:

  • I referred to LaVerne as my friend in the title of this article. To be honest, LaVerne and I aren’t really friends. Yet. We only see each other at scleroderma events, but I hope our connection will blossom into a friendship.
  • In the third paragraph, I referred to myself as “a white lady living in an affluent suburb.” Technically, that’s not quite accurate either. I am a white polka-dotted lady who never thought she would meet another face that looked like hers. Being part of the scleroderma community has given me the gift of seeing faces that mirror my own. I hope LaVerne can experience that same profound gift.

L and L

9 Comments »

  1. Once again, Lisa, you have hit the nail on the head! I never understand why many of the patients I meet don’t attend support group more regularly or at all. I hope LaVerne is able to meet some other black Scleroderma patients locally. Whether she does or does not, I hope she considers applying for a scholarship to the Scleroderma Foundation’s annual Conference next July in New Orleans. She would meet MANY black patients there, with the myriad of complications that accompany Scleroderma patients of various colors.

    I am not representing the Foundation in any way; I have just personally found so much love and support there, I have attended every year since I started going about a decade ago. So if either (or both) of you show up in N.O. next summer, I’ll be there to say Hi!

    And I hope your Education Day is a huge hit!

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  2. As a member of a marginalized population (disabled) I can relate to those who are also marginalized for various reasons. Does that mean I understand their specific experiences and historical/cultural background? Of course not. But sometimes this shared perspective of being on the “outside” gives us a starting point. I’m glad you shared your story with us and I hope you and LaVerne do develop a true friendship.

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  3. As I have said before Lisa your writing is so easy to follow and get the picture. This article was very eye opening in the many ways we see each other. And yes experiencing the same issue does bind people together. Love your writing

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  4. Thank you so much for such an honest approach to what can sometimes be the most difficult topic to discuss… Race can truly be one of the most uncomfortable things to talk about. I myself feel so very blessed that not only is my wonderful husband a different race than mine but I have had the privilege to share my life with two very special women both of which were black. They are not only my very best friends but more like sisters to me. I grew up in a very small town in the Deep South and some of my close family members to be frank were racist. They always blamed it on ” its just the way we were brought up” or some other sad excuses. As I got older I never understood why they were in my eyes so unacceptable of other people. So when I met my now husband my family was not very happy to say the least but here we are 18 years later still going strong!!! Some of them come around and really opened their hearts up to a beautiful change and some did not and for all those all I feel is sadness.. The thing that I believe is fear that keeps people from opening up and allowing themselves the opportunity to get to know someone solely based on the color of someone’s skin is completely mind blowing to say the least!! Had I followed the path that my family was on I would have not only missed out on meeting and marring the love of my life I would have also missed out on having some of the most amazing life long friendships that I have been blessed to have. So I do hope that you guys are able to build a life long friendship because of this and I again say thank you for being open and honest when so many others fail when it comes to what really sometimes comes down to fear.. And take it from me a person that basically had to go through so very much hate simply because I fell in love with a wonderful man if you close your eyes and open your heart in the end you will be a better person for it!!!

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  5. I don’t have scleroderma or another life threatening autoimmune disease but I have dealt with severe body image issues and I find your blog so inspiring. Being comfortable in our own skin, being comfortable in who we are as people is a wonderful message for all of us. Keep up the wonderful work you do. Besides raising awareness regarding your devastating disease your message of positivity and the importance of appreciating your self worth is valuable to a very broad audience.

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