Transcript

VR Workforce Singers:  VR Workforce Studio.

Ryann Mason:  To be able to prove to myself that, yes, this is something that I can do. And so I signed up for those shifts and realized, okay wait a minute, I took these steps away from the bedside to become comfortable in my wheelchair and my wheelchair is just an extension of my own body.

Jake Hart:  Four, three, two, one. VR Workforce Studio, podcasting the sparks that ignite vocational rehabilitation through the inspiring stories of people with disabilities who have gone to work.

Flora Frazier:  Working in a field that I understand.

Jake Hart:  As well as the professionals who have helped them.

James Hall:  A job and a career, you got to look at how life-changing this is.

Jake Hart:  And the businesses who have filled their talent pipelines with workers that happen to have disabilities.

Debby Hopkins:  To help expand registered apprenticeship.

Jake Hart:  These are their stories.

Megan Healy:  Because there’s such a great story to tell about people with disabilities.

Jake Hart:  Now, here are the hosts of the VR Workforce Studio, Rick Sizemore and Betsy Civilette.

Rick Sizemore:  Welcome to episode 113 of the VR Workforce Studio Podcast, the resolve to work in the face of a rare disease. February 29th is Rare Disease Awareness Day, celebrated on the 28th in non-leap years. As we honor those who are living and working with rare diseases like, Ehlers-Danlos Syndrome.

Betsy Civilette:  And Rick, one of the joys of being involved with this show, besides working with you, is the chance to learn about so many different disabilities and abilities, and to hear the inspiring stories of people in the workforce. Despite the sometimes insurmountable obstacles they face because of their disabilities.

Rick Sizemore:  Yeah, especially some of those rare diseases like, Ehlers-Danlos Syndrome or as it’s commonly referred to, EDS. If you’ve listened to this show for a while, you may remember Ryann Mason, former Ms. Wheelchair of Virginia. She had a huge impact as a nurse working with EDS who proved she was capable of effective service as a nurse from a wheelchair. And by the way, that’s episode 100 at vrworkforcestudio.com if you’d like to check that out. But today marks only the second time we’ve talked about EDS on this show. We’ll hear from the head of the Ehlers-Danlos Society, Doctor Lara Bloom, who’s here to help us better understand EDS, as well as some of the research and education that’s occurring to help improve the lives of individuals affected by EDS.

Betsy Civilette:  Right now, in our big inspiration showcase, we’ll meet a young woman whose career got sidetracked because of her EDS, as well as other chronic illnesses and she has been pursuing a master’s degree in social work, and has just launched a second career in communications. Christina Brookman is the host of the Speaking in Spoons Podcast. Welcome to the show, Christina.

Christina Brookman:  Thank you so much for having me. I’m, I’m really thrilled to be here.

Rick Sizemore:  Yeah.

Betsy Civilette:  A fellow podcaster.

Christina Brookman:  Yes.

(laughter).

Rick Sizemore:  This may be the first VR client who has actually started a podcast. So, Speaking in Spoons, how did this come up… How did you come up with this concept, Speaking in Spoons? And what does it mean?

Christina Brookman:  I wanted to do a podcast. I’m on medical leave right now, um. DARS was working with me, helping me, um, to become a medical social worker, um, to kind of, I wanted to use my experiences that I’ve been through, um, through disability to help other people with disabilities. I was really sad being on medical leave. I, uh, had been talking with a couple friends of mine about the idea of doing a podcast. We were bouncing around ideas and I’ve always loved the Spoon Theory. Which, uh, a woman, um, uh, wrote an article about, she has Lupus and it was her way of explaining to her friends and family that didn’t have a chronic illness what it’s like to live with a chronic illness. Like, using the idea of spoons as energy.

Rick Sizemore:  We’ve put a link in the show notes about the Spoon Theory. As you get into this conversation, the Spoon Theory’s actually fairly common among people with chronic illnesses. So, uh, Christina, I think you’re right on track. There’s only so many spoonful’s of energy to go around.

Christina Brookman:  And I just like the play on, uh, I guess speaking in tongues. I thought it was funny, so Speaking in Spoons.

Rick Sizemore:  Mm-hmm.

Christina Brookman:  Um, yeah.

Betsy Civilette:  Tell us a little bit more about your story, your career track and how that led you into podcasting.

Christina Brookman:  I, uh, I actually grew up in the theater, um, in Richmond. I, uh, trained at SPARK, the school of the performing arts in the Richmond community. And then I started performing in plays at Theatre IV or, uh, Virginia Rep now. Although they use Theatre IV for the touring, um, and loved it. And then went on to, uh, get my undergrad, uh, at Point Park University, which is a theater conservatory in Pittsburgh and that was my plan and, um. At one point I came back to Richmond and I started teaching for SPARK again and got into outreach with children and I absolutely adored it, um. And I worked in the education department at Theatre IV. But, my health just couldn’t, um, keep up with it. I found out I have a genetic disorder called Ehlers-Danlos and also a condition that’s sometimes associated with it called POTS, um. That’s coming in the news now with long Covid. I have, um, hemiplegic migraines which is a type of migraine where it can resemble a stroke. So like, the right side of your body, um, the right side of my face will droop and I have difficulty speaking and then my leg and right arm either go paralyze, fully paralyzed or weak. And that’s been truly disabling. I’ve worked with DARS off and on for ten years. I’ve had the same, uh, I guess techy counselor the whole time in Virginia and I absolutely adore her, she’s just been so supportive.

Rick Sizemore:  But, Christina, as, as a person with, uh, a, a rare disease and someone who’s gone through vocational rehabilitation, what is your perspective on the value of VR and how it can help someone with a disability move into the workforce?

Christina Brookman:  Um, I think it’s invaluable, um, uh. Having, uh, people out there to help you kind of figure out and find what you are able to do. As life has changed when you have a disability, finding what your strengths are and putting like a word to it and refocusing it, um, and giving you all those resources. I was able to get financial counseling. I mean, there was so many things I didn’t know that would, I would still have as a resource. I was terrified that once I went back to work I would be, you know, just flung to the wolves, um, after years of not working, um. And it was very comforting to realize that that’s not how it is at all. And also, just how many different things that are out there to help me, like with technology, um. Pat would bring me into the tech room and we’d try different chairs. There’s just so many options and to feel like you have support, um. I think when you have a rare disease, because I have multiple, the diagnosis process is exhausting. The lack of recognition and understanding is exhausting. But then to have a place where you can go where you’re seen, and accepted, and supported, through VR counseling, there’s just, I mean, there’s no price on that, there’s no words. Last fall, I decided I wanted to be a social worker, medical social worker and, um, I made it through a whole semester, very exciting, um. But I had to stop, my body, it was just not in a place yet. But DARS has been, so been extremely supportive to me through the whole process, um…

Rick Sizemore:  It’s an amazing, uh, reflection on, on your resilience. You may have, uh, encountered Ryann Mason, the former guest on our podcast, uh, who was actually Ms. Wheelchair of Virginia had Ehlers-Danlos and as she talks about her career and moving into the nursing field, she also discussed some of that sadness that you talked about. But you seemed to…

Christina Brookman:  Yeah.

Rick Sizemore:  Have made some amazing strides into creating a career path. So, what, what does the… What does your disability, uh, mean for you in, in terms of the long-term career path? You’ve got the potential of medical social work. You’re now in a second career in, uh, communications. Where does this all lead?

Christina Brookman:  Um, I think it, it’s actually a, an interesting question because we just recorded our first episode of this season called, Acceptance and Change, um, and we were, we were talking about this. About how, what a grieving process it is, um, disability and it’s not just something you master once it’s a lifelong grieving process. So like, even when I think I’ve mastered it, the next day will come and it, and it’s a choice to continue working on it, um, and, um. And I think what this has, has done for me, um, I… Disability has really shown me, um, what love is because I’ve, uh, been blessed to learn through it, um, you know, the toxic people leave and the people that truly love you stay. And then you’re introduced to this world of people that, um, love you for who you are. You know, I’ve had great conversations, I’ve met wonderful people and as horrible as the pain, you know, the pain and everything that comes with it, it’s also changed my life in a way that I’ve… I’ve always wanted to help people, like when, when I did outreach with theatre working with those kids, um, I loved that. I loved feeling like I was helping. Theatre was always community for me, stories, working together, and so that’s what this is just in a, a different fashion. And giving, I think there’s nothing more important than giving people a venue for their voice…

Betsy Civilette:  Mm-hmm.

Christina Brookman:  To be heard.

Betsy Civilette:  So important. And speaking of stories, you’ve got one season under your belt, with the podcast, um. Do you have a favorite story about somebody that’s been on your podcast and could you share that with us?

Christina Brookman:  Um. Oh wow.

(laughs).

Christina Brookman:  I, I think the favorite thing that has happened for me is the friendships. Like, um, Nate who’s a co-host, I’ve known him for about six years and we’ve become even closer through this. But, Lexi, I had just met, she’s also the, a co-host. I had just met, um, through mutual friends, uh, we got connected because we have some of the disorders and we have just become the best of friends. And it’s, I know that we will be in each other’s lives forever, you know. We’re, we’re family now and the three of us it’s just, you know, we’re, we’re family. And it’s also nice bringing the guests in and, uh, learning from them, uh. We had a really great episode on service animals, um, and, uh… Yeah, just telling the stories and I don’t know. I kinda love it all.

Betsy Civilette:  Well, good!

Christina Brookman:  That has been another favorite thing of reading the emails and messages from people with disabilities who have connected to the podcast and, um, feel like they have a positive, um, connection and support system and even people without disabilities. I had someone write in and said, you know, “I’m not disabled but I really connect with the, the medical trauma and gaslighting.” Because of how long it took her to get a diagnosis for something. I think, got, um, a connection for a lot of people.

Betsy Civilette:  Mm-hmm. Well you talked about helping people and this certainly is, uh. You’re using your voice to, uh, connect with people and to help people. So I think you’re on your way to a, a, a great career and, um, I see your lineup for season two, uh, you have a full calendar.

Christina Brookman:  Oh yeah, um. Thank you, um. We’ve got, uh, accessibility and representation in the arts. There’s a graphic novel that was written recently about invisible disability where the creator has an invisible disability. But they also have like, write-in with like each episode from different people like, that had diabetes or schizophrenia and talking about their personal experiences, um. We’re also having someone from DARS come in to talk about vocational rehabilitation, voting and accessibility. I think that’s something people don’t think about is…

Betsy Civilette:  Right.

Christina Brookman:  How challenging it can be for people with disabilities to, to vote, um, have their voices heard.

Betsy Civilette:  Christina Brookman is the host of the Speaking in Spoons Podcast. She continues to show tremendous resolve to work in the face of a rare disease.

Rick Sizemore:  We’ll include her contact information, as well as links to her website and podcast in the show notes at vrworkforcestudio.com. Thank you for being on our show today, Christina.

Betsy Civilette:  Yeah, thank you, Christina, and good luck with your podcast.

Christina Brookman:  Thank you so much. Thank you for the support and having me on and I’m looking forward to, uh,  the lifelong connection of fellow podcasters.

Rick Sizemore:  As we continue our focus on rare disease awareness, we’re pleased to welcome Doctor Lara Bloom to the podcast. Doctor Bloom is the president and CEO of the Ehlers-Danlos Society, is widely recognized for her accomplishments over the last decade as a leader in patient engagement and global collaboration. Doctor Bloom is a professor at Penn State College of Medicine and a celebrated public speaker who often shares who own story. Welcome Doctor Lara Bloom.

Dr. Lara Bloom:  Thank you, it’s good to be here.

Betsy Civilette:  Well, you have an incredible voice for EDS and other rare diseases. But, as a person living with EDS in the backdrop of your profoundly important roles as a global speaker, CEO, and college professor, we’d like to start with your reaction to Christina’s story, uh. How does it make you feel to hear about her struggles with chronic illness and her accomplishments, including her new podcast about living with rare diseases like EDS?

Dr. Lara Bloom:  I think it’s fantastic. I mean, I can really, really, um, relate to Christina’s story, you know. And myself, I was a photographer and that was my ambition, and my hope, and my career path, and when I was diagnosed at the age of 24, everything changed. And I thought at that point  was, that was a really negative thing and actually it’s turned out to be a really positive thing. Like it has been for Christina that sometimes you just have to readjust what your hopes, and dreams, and ambitions are and, and pivot and change and, and sometimes that outcome can even better than you thought. Albeit, sometimes quite frustrating and not what you had hoped but sometimes our bodies have other plans.

Rick Sizemore:  Uh, Doctor Bloom, could you tell us about your work at Penn State and your work with the Ehlers-Danlos Society?

Dr. Lara Bloom:  I’ve been working in this space now for I think 13 years almost, which seems crazy, um. And I’ve been running the Ehlers-Danlos Society since 2016, when we launched and working in the field of rare, um, chronic, invisible conditions. But really, always with a focus on the importance of patient engagement and making sure that patients are equal stakeholders around the table and have their voices heard from, from the very conception of anything right through to kind of post launch. And I think that that has become more and more important. But when I started in this area it was just really quite unknown. So it’s, it’s been very nice to see how things have progressed and one of the most wonderful moments was in March 2020, when I was appointed a professor of practice in patient engagement and global collaboration. It’s the first position of its kind and it gives me the opportunity to really think, um, academically as well. Lecturing to, you know, future medical, um, professionals and students about how important it is to, to think of the person, you know, impacted by the condition and not just think of them as patient and data and, and how important they are to the work that they are going to be doing, um, during their careers. So it’s, it’s been a wonderful privilege and I’m, I’m really love what I do.

Betsy Civilette:  Doctor Bloom, we talk about a variety of disabilities on this show, which focuses on people with disabilities in the workforce and what advice would you have for those with EDS who are moving into the workforce or trying to retain their job?

Dr. Lara Bloom:  I think it’s tricky. I think pacing is key, you know, the Spoon Theory is one that works very well for EDS, where you have to pick your spoons carefully each day. I think it helps to always just accommodate. I go to the gym five to six times a week and a lot of the exercises I do, I found ways to do them sitting down versus standing up, for example, um. I’ve, I struggle with laying flat with my neck, so things on an incline. So, it’s not what you don’t do things, it’s how you do things differently and that’s certainly the case with work. I have a very kind of ergonomic chair that I have picked carefully and my environment that I work in is, helps with my pain and I make sure I get up, I have a treadmill, an office treadmill next to me. You know, movement is so important with EDS and HSD. But it needs to be carefully considered movement and so I’ve, over the years, kind of perfected what that looks like, and it is different for everybody, you know, when I say I’ve perfected what it looks like, I’ve perfected what it looks like for me and for someone else that could be very, very different. It could be exercises from a chair, or from bed, or from a wheelchair, um, and for others it could be a lot more active than what I’m doing. So, I just think it’s important to have those accommodations in the workplace. To not be scared to vocalize what they need to be and to also realize how much living with a chronic condition is about self-care and self-advocacy. So, if you need something, you need to speak up and you need to tell you employee that that will help you in your day-to-day work. We’re constantly encouraging people to advocate for themselves and to realize what things can help them with school, universities, colleges, in, in work places, but also in your home with your partner and your parents and, you know, understanding that one day you might be able to do the dishes, but the next day you can’t and communicating why that is and realizing that there could be frustrations from people you live with on that and accepting that too. So, it’s just all about communication, acceptance, and working with what and who is around you.

Rick Sizemore:  What would you want our listeners to know about the Ehlers-Danlos Society and their research and education that’s occurring to help people with EDS and other rare diseases?

Dr. Lara Bloom:  We’re doing some really exciting stuff at the Ehlers-Danlos Society. I think, you know, we’re, the framework of our mission is care. Care, access, research, and education. And everything we do ties back to that in some way, and we’re committed to funding research. Though before we existed there was very little, if anything at all, investing in research. In terms of funding and we have given just over six and a half million dollars in the last four years, I believe, um. Which is huge and a drop in the ocean, all at the same time, um. There’s lots to do but we’re doing great stuff, we’ve built a registry with almost 20,000 people in it from all over the world. We have built the Hedge Study which is looking for the genetic causes behind Hypermobile EDS and funded a lot of, you know, individual researchers in lots of different disciplines and types of EDS and, and HSD. So, progression is there, um, education is there. We’re educating people through our EDS ECHO platform, which is telementoring, or teach, or learn. The concept of that is move knowledge not patients, and so that’s really exciting. And there’s just, you know, there’s so much neglect for so long, for decades and so we’re just really proud to be filling the many gaps there are, but being realistic that we kind of started at zero, in many ways, and we’ve got a long way to go and lots that need funding and building on. But it’s a, it’s an optimistic time for these conditions, I believe.

Betsy Civilette:  But what do you believe is the most important message you have for people living with EDS, going forward?

Dr. Lara Bloom:  I think it’s to keep, keep hopeful, um, and realize that it’s not in your head. For so long, so many people are told it’s in their head. There are people out there that believe you and hear you and see you and, um. That there’s a lot on the horizon that’s gonna help, um, in many different areas. I think diagnose, diagnosis is key, we need to get people diagnosed when their symptoms begin. We need to realize that EDS and HSD is a vast spectrum. There’s no right and wrong way of having the condition. It’s different for everybody, um, and everybody’s experience is valid.

Rick Sizemore:  On the website, the I Am Number 17 Campaign, can you tell us a little about these amazing photographs that, that you’re involved in?

Dr. Lara Bloom:  Um, yeah. So, I was very, um, honored to be chosen for the campaign that was based in the UK called, I Am Number 17. Which highlighted one in 17 people impacted by rare disease and we were partnered with artists who brought to life our symptoms and our experience. And as I was a photographer, and still am in a, in a, to an extent, I was partnered with an amazing photographer called Ross Ferguson who took pictures of me, which I felt expressed my different sides; my CEO, my patient, my, you know, showing my tattoos, showing who I was. And it was such a, a joy working with him and being part of the gallery event where we got to see everybody’s, uh, all the change makers artwork and they were so inspiring and, and really beautifully done. It was a really wonderful campaign to be part of and it’s still going on.

Rick Sizemore:  You can see those at larabloom.com. That’s L-A-R-A, larabloom.com. My daughter’s a tattoo fanatic and, uh, she, she, I showed ‘em to her. She loved, she loved your tattoos.

Dr. Lara Bloom:  Aww, thanks.

Rick Sizemore:  Great, great photographs.

Betsy Civilette:  Well, I really have enjoyed your vlogs. I was…

(laughter).

Betsy Civilette:  Admiring your… This, is that your, that’s your garden, uh, workspace?

Dr. Lara Bloom:  My, my little she-cave, yes it is.

Betsy Civilette:  Oh, I loved it ‘cause I’ve, I’ve been looking at building my own little tiny house on wheels and I was like, “Oh, that’s exactly kind of thing I want.”

Dr. Lara Bloom:  Amazing. I love it.

Betsy Civilette:  Yeah.

Dr. Lara Bloom:  Absolutely love it.

Betsy Civilette:  Doctor Bloom, it has been such a pleasure to speak with you, uh. Thank you for sharing your journey and what a journey it is. I was exhausted just watching your video blog.

Dr. Lara Bloom:  That’s fantastic. Thank you so much.

Rick Sizemore:  Doctor Lara Bloom heads up the Ehlers-Danlos Society, works as a professor at Penn State College of Medicine while maintaining an active role as one of the world’s most highly recognized spokespersons for EDS.

Dr. Lara Bloom:  Thank you so much.

Rick Sizemore:  Join us in the VR Workforce Studio library for more on Ehlers-Danlos.

Ryann Mason:  Now I’ve gotten to a point where my wheelchair is just an extension of my own body. So, doing this job that I had done for years was difficult but I could do it. And so, after that, that just lit a fire under me.

Rick Sizemore:  Plus RSA’s Carol Dobak.

Carol Dobak:  I find them inspiring. So grateful that you have the opportunity, through these podcasts to share these stories.

Rick Sizemore:  Plus Eric K. Johnson.

Eric K. Johnson:  VR Workforce Studio Podcast has emerged over the past few years as the nation’s voice for sharing these powerful and compelling stories of disability employment.

Rick Sizemore:  That’s episode 100 at vrworkforcestudio.com or on your favorite podcast app. Well it’s time for our National Clearinghouse report with the always entertaining and informative Heather Servais. Welcome, Heather.

Heather Servais:  Hi, Rick, good to be back.

Rick Sizemore:  Yeah, we’re acknowledging those with rare diseases who are on the career pathway and in the workforce. Tell me what you thought of Christina Brookman.

Heather Servais:  Ooh, I really loved hearing Christina’s story. I was so, um, drawn to her determination and, you know, with her launching that new podcast, I think she just got herself a new listener ‘cause I know I’ll be…

Rick Sizemore:  Certainly. Speaking in Spoons, we’ll have the link that in our show notes. But, it’s also Job Shadowing Month. You’ve got some, uh, great, uh, resources in your report for us.

Heather Servais:  I do, I have two resources to share. The first, I really want to take a moment to talk about is the NCRTM Programs and Services page, and this is a new feature of the National Clearinghouse of Rehabilitation Training Materials website. And the Programs and Services page is a great spot for individuals with disabilities who are beginning their job searching. So, whether you’re job searching, or you’re interested in employment, or even if you’re considering advancing your employment, the Programs and Services page has a lot of information. Everything in there from; self-advocacy, job seeking tools, research, career advancement tools, accommodation information. This is also a great place for VR counselors who are looking to work with our customers and find resources that may help inform their counselling and guidance that they do with their customers. So, you can use these in your practice or you can also share them directly with your VR customers so that they can have access, um, and look through some of these resources on their own.

I also have a resource for you for National Job Shadowing Month. So, I’m excited to share this with you since we look at job shadowing in February as part of the services that can really open up our ideas and understanding of what the workplace is like. And so, we have a work-based learning experience web resource from the National Technical Assistance Center on Transition, the Collaborative. Also known as NTACT:C and this resource really shows the different types of work-based learning experiences, which is what job shadowing is. And so, what you can see when you visit this website is you will be able to look at the different types of work-based learning experiences there are and really start to connect to see how these real world work experiences provide students with the knowledge and the skills that will help them connect to their school experiences to real life work activities and even further, to future career opportunities.

Rick Sizemore:  Links to all of the resources and information in Heather’s report, as well as a link every VR counsellor should save as a favorite on their desktop, which is the link to RSA’s National Clearinghouse of Rehabilitation Training Materials. All available in the show notes at vrworkforcestudio.com. Heather Servais is the director of RSA’s National Clearinghouse of Rehabilitation Training Materials and serves as a member of the VR Workforce Studio team. Thanks, Heather.

Heather Servais:  Thanks, Rick.

Rick Sizemore:  Well, thank you for getting involved in today’s show. If you or someone you know has a disability and wants to get into the workforce, vocational rehabilitation may just be the answer to kickstart your career. Visit us at vrworkforcestudio.com to find links and resources as well as our contact information. On behalf of my co-host, Betsy Civilette, and I’m Rick Sizemore inviting you to join us as we podcast the sparks that ignite vocational rehabilitation.

Jake Hart:  The VR Workforce Studio Podcast is owned and operated by Vocational Rehabilitation’s Partners in Podcasting. Audio content for the podcast is provided to VR Partners in Podcasting by the Virginia Department for Aging and Rehabilitative Services, in exchange for promotional considerations.