This very special episode of Lawline’s Lawyers Who Lead podcast is dedicated in memory of Brooke Mehta. Sigalle chats with Leslie Mehta, Brooke’s mother and the founder of pRETTy Brooke, an award nominated resource that educates and inspires legislative change by providing interviews with thought leaders and politicians about Rett Syndrome and disability issues. pRETTy Brooke is a powerful and moving account of this lawyer's own grief and advocacy journey. Listen to the full interview or read the highlights of Leslie’s interview below! Transcribed answers were edited for readability.
I am a Howard Law graduate and we are all ingrained to be social engineers. And so I crafted my trajectory in that way. I started out doing associate work at firms and then I was at a civil rights firm and other organizations. Then I was at the ACLU of Virginia and I was the Legal Director there. During that time is when my daughter, Brooke, was born. I had been doing civil rights, social justice work and it's a passion of mine. I continue with that. Part of that was disability rights work. It was one kind of small part of what I did. But then after my daughter Brooke was born we found out that she was having challenges. She wasn't developing in the same way as other six-month-olds.
We didn't know what was happening, but as I say, one finger prick in 2017 changed our fate. It was Rett Syndrome and we didn't even know what that was. We had to Google it. And that kind of sent us on another journey of trying to figure out what it was, how we could advocate for her, and then it became a larger thing of advocating for disability rights as a whole.
Which ultimately led me to being on the board of the International Rett Syndrome Foundation where I'm very proud of the work that the organization does and help in a small way to contribute to that, particularly with lobbying for additional funding for Rett Syndrome and advocating for medical research. And we started down that path and unfortunately in March of 2021, Brookie passed away. But I continue that work really as a legacy to her, we're still hopeful that there will be a cure for Rett Syndrome one day.
I still advocate on my prettybrooke.com website and the social media pages and all of those things for other disability issues. And I always say, I advocated for other folks throughout my career, I can certainly advocate for my Brookie. And even though she's passed away, I still think of it as advocating for Brooke and others like Brooke.
This work keeps her memory alive. Whenever I'm doing anything related to disability rights, when I'm advocating for something, accessibility issues, dealing with funding, medical research, caregivers (it's important that caregivers get the resources that they need), I'm thinking in terms of Brooke and her legacy.
Unlike my younger daughter, Blair, she was not really a fan of being on the camera. I would say we're doing this for other kids like you who need a voice. That would shift the whole thing for her, because I could tell, even though she was only five years old, that was a passion of hers too. She was all about helping. So when I think in terms of her legacy, that is what I think of.
And one day I hope and pray that there will be a cure for Rett Syndrome so that other families do not have to endure what we had to endure.
I've worked hard on this … internally. I've thought about it because initially when she first passed away, in terms of my own way of processing things, the first thing that I wanted to do was to dive in deeper. Honestly, I thought, I need to take a step back because I do have to think about my own self care. So I took a step back and I actually still haven't ramped up quite as much as I'd like. I think about it a little bit more strategically now, about how I spend my time with this because I can go deep down into it and it can take you to a place of grief, honestly.
But I actually was talking to my Congresswoman, Abigail Spanberger, who, actually, she's been amazing. She sponsored the bill on Rett Syndrome funding to be part of the DOD, the Department of Defense, and she sponsored it on the Representative side, the House side. We talked numerous times. She's my own representative and this was all before Brooke passed away. I informed her that Brooke had passed and she actually ended up recording a message for our funeral for Brooke. She had met her a couple of times.
When I was having a conversation with her to thank her, she said to me, Leslie, I know that you are a doer, but you might need to step back a little bit when it comes to this, because you also have to think about your own health, mental health, and diving right in might seem great at the time, but it may delay the mental health aspect of it.
When I was approached to be on the board of the International Rett Syndrome Foundation, I had been working with the Executive Director, Melissa Kennedy. I was already helping with the funding and the lobbying. I hesitated for a moment because taking on one more thing was one more thing.
I still struggle with it quite honestly, in terms of Brooke's legacy and my own self care. I'm constantly trying to revisit it. Am I doing enough or too much in one area? I still have another two-year-old who needs my attention. But this work keeps her memory alive. I don't want to do a disservice to myself or my mental health, but I also want to continue to keep her memory alive and to keep moving forward.
It was during the height of the previous administration. There were a lot of lawsuits and potential lawsuits. There was just a lot going on. In 2017, Charlottesville happened and we represented the Nazis. Obviously as an African-American woman, that was not an easy decision.
We had just learned the month before that Brooke was diagnosed with Rett Syndrome, I already had these feelings inside about, do I need to do something different. Brooke was not able to walk or talk. She couldn't eat solid foods. There were all of those things going on. I had all of those extra responsibilities and then I started the website, social media page. So those are kind of things in the background.
Then the Executive Director tells me there was this person who wanted to have this protest. I'd done a little bit of research and I said, it sounds like his protest is tied to what the location is. It may be something that he could, you know, potentially challenge. We knew it was Nazis and that kind of thing. But I jokingly said, he's not going to reach out to the ACLU and I went on vacation.
[Then] I get this call from our Executive Director saying, you will not believe this. He actually did reach out.
It [also] just so happened to be my ten-year wedding anniversary. This was my first vacation at the ACLU of Virginia. I had not taken one and this was my ten-year anniversary. We talked about it and she [the Executive Director] totally supported me. I said, I'll read the briefs, but I'm not coming back. She completely agreed.
Someone else did the initial drafting, someone else did the arguing, but I was reading the briefs, I was giving comments and all of those things that you do. And we took on the case. Obviously we did not know it was going to happen like this. There was no indication that there was any violence that would occur. We also thought if there was evidence on the other side, it would have been presented and I didn't see anything like that when I read the briefing. I thought we might actually win this.
To this day, I'd never met him in person so I don't know that he knows that I'm African-American and by some of the things that he said on calls, I'm not sure that he did know. But we took on the case, which was a hard one because we felt that was the right thing to do. Freedom of speech must mean something, and it was certainly not an easy decision and it was not an easy time.
We got a lot of backlash, particularly after the violence and the death of Heather Heyer, which I understand the concerns on the other side. It's not something that's lost on me, particularly as an African-American woman. But I had just learned about the Rett syndrome diagnosis. We got death threats. Internally, there were a lot of people who made comments. My calls were no longer being returned internally in some instances from other ACLU affiliates. It was a rough time. And so all of that kind of played into me needing to do something different.
The thing is there's a balance when you're caring for a person with a disability and that is why I stepped back from the ACLU of Virginia. Being the Legal Director there was a 24-hour job in a lot of ways. I loved every minute of it, but I also had to think in terms of my family.
I want to make it clear, particularly for people who have challenging careers and also raising children with disabilities, sometimes people feel as though they have to take a step back. I still work full-time. I'm the Chief of Staff and Counsel to the CEO at RMTA and it's a full-time job, but it's not a 24/7 job. And so that made all the difference for me and our family.
I just took a little time to think through what things would be satisfying to me and still keep a toe in the legal community. I do [things] outside of the legal community, the lobbying and I'm on a commission for racial equity, inequity in Virginia law - I was appointed by the now former Governor of Virginia.
When people are thinking about their legal careers, I always advise young lawyers to think of it in its totality. I feel as though your day job is one aspect of it. Once you get that law degree, you can do things like be on commissions, on boards, advocate in the community. I started out with my personal advocacy portion. You don't need a title. You don't need someone to tell you that you can do it. You can do it.
I think when it comes to grief, it's individual and unique. I think that even though my husband and I were both going through the same thing, we handled it very differently. But for me, one of the great things is that I have two wonderful, amazing sisters. My mother is amazing. I have friends and neighbors who reached out. The thing about it was they didn't wait for me to tell them what I needed. They just did it.
Blair was a year-and-a-half old, when Brooke passed away, my mom, my sisters came. My best friend, Kim, came. They cooked, they cleaned, and then neighbors, people I didn't even really know who were down the street brought casseroles. Something as simple as sending a text or saying, I have a picture, I'm not sure if you have seen this, I don't know if you want to see this right now, I can send it to you if you like. So if I were not in a place that I'd feel up to looking at another picture, then they wouldn't send it.
I say this all the time, her school was amazing. She was still in virtual kindergarten and one of the things that I kept saying was she didn't get to finish kindergarten. And they did this whole program and they gave me a certificate of completion of kindergarten. People ask if there were a fire, what one thing would you grab, besides your family? It would be that certificate. It meant the world to me. They released butterflies, they have a little plaque at the front of the school with her name, it keeps her memory alive.
And talking about Brooke, it was for me to just to say her name, to just acknowledge that she existed for five years. Sometimes you just like to hear that person's name. She was a person. She was funny. She hated school some days, just a regular kid. People who care can do all sorts of things that could be beneficial and continue the memory of those who are grieving. So it's not one thing and it's continuous.
She's always here in my heart. Everyday. So if someone waited, they said, oh, I didn't really say anything so maybe it's too late. Don't think that. If you think about it in a year and say, I didn't say anything before, but I wanted to reach out and see how you're doing. Do that. Just say it, even if it's been years later, just say it. That's my advice.
When I think about how she would be now, I think about how she would have a relationship with her sister. I have this one picture of Brooke and Blair looking at each other and it looks like Brooke is trying to impart wisdom on Blair. It's so cute and I think their relationship would have grown stronger. And that's what, that's one of the things that's heartbreaking to me because I have two sisters and I cherish our relationships. But yeah, that's the part that I think about, like how would that have grown? And Brooke was getting a lot more proficient with her Toby eye-gaze device and being able to say what she wanted to say through the device.
So it makes me wonder how things would have been, and then certainly as we inch closer, hopefully to a cure. How would it have been if there had been a cure and she could walk and talk and have more control of her hands and do those things too. Those are some of the things that I think about.
Resilience. I thought I was a tough, resilient person before Brooke. We were older parents, I was 38 when Brooke was born, I was 42 when Blair was born. But one of the things I really wanted was patience and I got that like tenfold and tried to deal with all of these situations. But I feel as though from just the journey with Brooke, I learned a lot about being resilient.
Like now it's a lot harder to rattle me, I think. People will say things like you seem so positive. You seem so strong, but I feel like Brooke was the strong one. She's the one that endured all of the hospital visits. She had surgeries and procedures and seizures and all of those things that she endured. I was lucky enough to be along for the ride with her.
It was just a normal day and she took a nap and didn't wake up. We were hopeful for clinical trials. We were hopeful that she would live a long life. Even if she, even if there had not been a cure, we were hopeful for a long life. We were preparing for what would happen with her once we passed away, these were the things that we were thinking about.
When things seem to not be going my way or I get frustrated or I feel as though I'm not doing enough in one part of my legal career, as I'm sure a lot of your listeners can attest to as well, I think back to all of that, and I think I've done a lot. I buried my baby. I can do anything. That's what I think about. If I could do that, there's nothing that I can't do.
Even when we talk about big multi-million dollar projects and reviewing the contracts and whether this is going to happen or whatever, it puts all of that into perspective.
I think that one of the things about being a lawyer I've always thought was interesting is that no matter how you practice, no matter how you do what you do, you get to bring yourself to the work. Even if it's just a contract, you get to bring who you are and so, I don't know, I feel like it's incorporated no matter what into what I do, it's incorporated into the advocacy that I do. You bring who you are to all of those things, the passions that you want to do on the side work that you do, the volunteering. We were all blessed to have this law degree. And then at that point, it's up to you, what you do with it.
One of the things that is really important to me and has been the mentoring piece. I get to do that a little bit now as well. I think that for me, it is very important to be able to retain lawyers of color and women lawyers. It is paramount and what can we do as a community, a legal community to make sure that happens.
There are so many who, for a multitude of reasons, decide that they're going to drop out and not participate in any aspect and it is concerning. Not everybody wants to be a partner at a law firm, but there are so many who don't find a space for themselves. And it does make me wonder, what is it? What are those issues? There are women, people of color who just find themselves not fitting in one way or another. And I like to mentor young law students or folks who are just starting out, but sometimes that's not necessarily the issue.
There are high percentages of females who are graduating from law school, high percentages of people of color graduating from law school. But somewhere along the way, people fizzle out. I don't necessarily have the answer, but I think that's something that the legal community needs to look inward about. What are the obstacles? It probably couldn't have happened because of all the things that were going on with my career when I was at the ACLU, but perhaps under different circumstances, it could have worked.
Maybe there could have been a Co-Legal Director position or something like that. I'm just kind of thinking off the top of my head. I wasn't creative enough to even think of those kinds of things. I will say my husband is a very good support as well, but in our culture, women are the ones usually who are doing the bulk of the caregiving.
I think for a lot of reasons, women are taking a step back when you're talking about something that's a 24/7 kind of job.
And it's not just mothers. I started having those feelings before I became a mother, because first of all, I was thinking about potentially being a mother. But even of those of us who choose a different path, if it's all white men (there are lots of things that you can have in common outside of race and gender, don't get me wrong), but at the beginning of my career, when you're talking about somebody who's 45-years-old, who you think is super old and you're 25 and you have nothing else in common … you do feel isolated and different, and maybe this isn't the place I need to be.
There could be a lot of other reasons why women and people of color drop out. Personally, I feel like those kinds of [things can] contribute to feeling like other and not feeling like you belong. And I will say I don't necessarily think that it's always intentional on the part of the people at the top. I'm not trying to say that, but it's a feeling that exists. Whether or not people intentionally want to do it or not.
And 20 years ago when I was starting out, I don't know that people were thinking like that, hopeful that things are changing, but I don't think 20 years ago people were as intentional about it. I can talk till I'm blue in the face about my experiences 20 years ago, but that might be old information. Unless you're actually talking to people who are going through it now.
It means so many things. I think it is important in terms of giving back. I think it is important, even if it's informal. A lot of my mentorship these days is informal. Just talking to people who are thinking about law school or we've had tons of babysitters with everything that was happening with Brooke. So some of them, I consider them my second daughters. So I keep in touch with a lot of them about what their career paths are. Even if it's not practicing law, nurturing that next generation.
I also think advocacy is important no matter what your day job is. I think it's a responsibility, that law degree, is a responsibility to do things with it. We've learned how to think like a lawyer, so now use it, and it doesn't have to be some fancy title. It doesn't have to be disability rights. It doesn't have to be any of the things that I've done. I think that we all have our own way of contributing and giving back to society for really the benefit of having this law degree.
So I think leadership can mean whatever kind of aspect of it you want it to be, but it's about making sure that you give back to the community in some way, maybe, perhaps mentoring the next generation and doing something. Just do something, do something to help it doesn't have to be any particular thing. Just do something. And there's so many things that can be done. So there's an opportunity for all of us to help in our little piece of the world.
So first, please take a look at the website prettybrooke.com and we also have a Facebook page, pRETTy Brooke. We still do the YouTube channel as well, same name, but also I would invite people if they're particularly interested in Rett Syndrome to learn more about it at International Rett Syndrome Foundation because it is a great organization doing great work as well on Rett Syndrome research.
Lawyers Who Lead is a weekly podcast that celebrates lawyers who are making powerful changes through extraordinary leadership. Each week, Lawline’s Chief Storyteller, Sigalle Barness, interviews a lawyer who is driving meaningful change in the legal industry. Guests represent a diverse and exciting range of experiences but with one common thread, the pursuit of bettering the legal profession.
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