"I THOUGHT I WAS ALONE"
For 25 years, Ruth Rathblott tried to hide her physical disability. Today, she embraces it
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An estimated 40 million Americans, about one in eight people in this country, has a disability. What exactly is a disability? The Americans With Disabilities Act says it’s someone with “physical or mental impairment that substantially limits one or more life activities; a history or record of such an impairment, or (is) perceived by others as having an impairment.”
The most common disability relates to mobility (21 million). Fifteen million people have cognitive or mental impairments. Twelve million experience hearing difficulties, nine million have vision impairments, eight million have difficulty with self-care. Nearly half of seniors over 75 have a disability.
Credit: Getty Images
“At some point in their lives, most people will either have a disability or know someone who has one,” says Dr. Coleen Boyle, director of CDC’s National Center on Birth Defects and Developmental Disabilities.
My friend, Ruth Rathblott, has a physical disability. Her left hand is not fully formed. It’s called amniotic band syndrome. According to the Boston Children's Hospital website, it's caused when “fibrous bands of the amniotic sac (the lining inside the uterus that contains a fetus) get tangled around a developing fetus. Most of the time the bands wrap around an arm, leg, fingers or toes." The constriction acts like a tight rubber band, preventing the affected body part from fully developing. It is rare occurrence, one in 1,200 to 15,000 live births.
Ruth is former CEO of Harlem Educational Activities Fund, an after-school academic enrichment program. She now lectures and writes about living with a disability, and advocates for people with disabilities to be part of the conversation about diversity, equity and inclusion.
Ruth, who is now 52, grew up hiding her left hand. She hid it for 25 years. It has been a lifelong journey navigating the difficult passage from hiding her left hand to acceptance to celebration.
I recently talked to Ruth about that journey. Her remarks have been edited.
RC: When did you become aware that you had a disability? Did your parents talk about it? Not talk about it?
RR: I was born before the days of sonograms, so it was a total surprise when I came out. They did not talk about it. They made a decision early on. So, I hid it, so that no one would see it. I thought it started when I was 13 because I was going to a new, co-ed high school. I just got on the bus that day and I hid it which I thought was just for the day. But when I think about it I actually think I started to notice it when I went to a new school when I was 10 and some girls pointed it out. It made me conscious of it but I didn’t start hiding until I was 13.
RC: Is hiding a successful coping mechanism? Does that work?
RR: It worked for me. I got really, really good at it. It also became an obsession. I was constantly worried about it. It was literally exhausting. You had to always be thinking two or three steps ahead to worry about who was going to see your hand, how they were going to react, what situation you were going to put yourself in. (But) I wasn’t successful in that it took up a lot of brain space.
RC: Have other people with disabilities told you the same kinds of stories? About stress? Constantly being vigilant? Trying to hide?
RR: I think there are different schools of thought or camps. There are people who don’t hide at all. People who are really out and own it. There are people though who have hidden their disabilities. I have had people who have come up and say, “wow! I’ve been hiding for so long.” The constant consternation. The constant thinking about it.
RC: You talk about a relationship that helped you push forward.
RR: I think there were probably three things that happened that helped me move forward. The first was absolutely that relationship, someone who taught me how to cherish my hand and how to really look at it. I had spent so much time hiding my hand that I didn’t actually ever look at it or touch it. So that relationship taught me to love that part of myself that I deemed unlovable.
RC: What was it about that relationship that did that?
RR: He embraced it early and wanted it to be a part of our relationship, which was huge. And so, not letting me put up walls, so he couldn’t get in. He embraced my hand. That was the big wall, the big reason I wouldn’t let people in. He was persistent.
RC: Is it accurate to say you’ve now embraced or accepted your disability?
RR: Yeah. I would say so. I think the other piece of the puzzle that helped was I met people who had the same limb difference. I started to listen. I also started to open up about it with them. I thought I was alone. I thought I made this up. I was hiding. I was hiding under sweaters. I was hiding under books. I was hiding in my pocket. No, it turns out other people do that too. So I met this group of people through the Lucky Fin Project* and, all of the sudden, I realized I wasn’t alone.
RC: What is the psychic toll of hiding for a year, five years, 25 years?
RR: I would say it’s really intense. It probably mirrors in many ways the coming out process for gay, lesbian, transgender people. That idea of being your authentic self. It’s scary to reveal it, and then you start to do it little by little. You start to let others in, too. But I think you have to un-do a lot. For me, it was therapy. It was journaling. It was meditation. And it was finding a shared group, a shared experience, almost like a support group.
RC: What do you think people who do not have a disability don’t know or understand about people with a disability?
RR: I think we make assumptions about (disabled) people’s abilities. We think, “Oh, I’m going to help them by doing it for them.” So we make assumptions about them rather than asking what they can do. When I went zip lining in Belize, everyone else had these orange gloves and I didn’t. I said to the guide, “What about my gloves?” He said, “You don’t need them because you’ll be on the back of a buddy.” He didn’t even ask for my input. He made an assumption. He formulated a plan in his head about what I could and couldn’t do. I was insulted and embarrassed at first because it was a choice taken away from me. I do a lot. I windsurf. I kayak. I waterski. I do everything. So, to be told, “You can’t do this. We’re going to put you on the back of somebody.” I was like, absolutely not. [Ruth got a glove and zip lined on her own.]
Ruth speaks at Ted-X, Atlanta 11/5/2021
RC: You just gave a Ted-X talk in Atlanta. What was your message?
RR: There were two. One is when I stopped hiding, I found freedom. Because I started to experience joy again. It’s how I got back to living my life. The second piece was disability — the visible and the invisible— are missing from the diversity agenda. I’ve been on panels that featured deep conversations on race and gender. Very few of those conversations open themselves up to other differences. Yet, if we look at statistics, the largest minority group is actually people with disabilities. So why isn’t disability covered? The message I wanted to get out is: how do we re-define diversity to be more inclusive?
RC: I’m going to challenge you there. Some people will say America’s history is so fraught with the destruction, degradation and effects of racism, how can you compare disability to race?
RR: I think there are two answers. One is, there’s room for all differences in this conversation around diversity. The other is that disability cuts across all lines. It doesn’t discriminate. It doesn’t matter what race you are. It doesn’t matter what gender you are. It doesn’t matter what age. If you’re fighting for this idea that representation matters, we really need to talk about how we represent those who are different in a fuller context. I don't think it has to be competitive. I think there’s room for all differences in the conversation around diversity.
RC: In retrospect, with the benefit of hindsight, should parents, should your parents have talked about this? Would that have helped you early on?
RR: I think absolutely yes. It’s about talking about it. It’s about creating that first safe space for a child to know that they have a place to talk about it, that they have a place to have feelings about it, when things are tough, a place to go. But also a place to celebrate it. To your point [about her parents], no shame, no blame. I think they did the best job they could. They were alone. My mom passed away blaming herself for my hand because of what she thought was a pill (anti-depressant) that she took when she was pregnant and she did this to me. She didn’t. I was born this way.
RC: What advice would you give your younger, 13-year-old self? What would Ruth tell Ruthie?
RR: I’ve thought about that a lot. I would tell her that it’s going to be okay. I would tell her she didn’t need to hide. She wasn’t alone. Because she felt so alone. It’s going to be okay.
RC: You want to write a book. What’s the book in you that you want to let loose?
RR: I think the first one is a memoir and it’s about the idea of hiding and un-hiding. My journey really is the angst of hiding, the journey of my heart and acceptance.
(Ruth's website is: www.ruthrathblott.com)
* www.luckyfinproject.org