Harnessing the Power of Legal and Medical Insights With Bryce Rafferty

Speaker 1:
0:02

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights.

Speaker 1:
0:33

I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery. Grab your favorite cup of coffee or tea and join me at the table. Today I'm continuing an important conversation with my guest, bryce Rafferty. Bryce is a dedicated staff attorney with the Colorado Cross Disability Coalition, where he works tirelessly to advocate for disability rights, including those with invisible disabilities. So settle in and let's dive into part two of this empowering discussion. If you need a quick refresher, here's where we paused last time and what's ahead in our conversation.

Speaker 2:
1:13

To take it back to disability and health. So I get injured in a shallow water diving accident with someone. I'm 20 years old and I am five days into a study abroad semester in college and the Swiss gave me the green light to go to their premier spinal cord injury facility, to SPC in Lucerne. Now I also went to Craig Hospital here in the States and this is not a slight at all. On Craig Hospital, I love Craig Hospital and it's one of the best institutions for spinal cord injuries and brain injuries in the country. The difference is at SPZ in Switzerland. First of all, the facility. Everything was integrated. They had their own ICU, their own surgical unit. They had 170 beds. They had a ton of outpatient services as well as inpatient services.

Speaker 2:
2:04

It was also the headquarters for all the Swiss Paralympians and Paralympic teams. It had sports facilities, basketball courts, pools that were also used by the community. But the plan of action for a new injury like myself was as a quadriplegic, you're there for nine months. Is as a quadriplegic, you're there for nine months. If you're a paraplegic, which for the audience means you know you have generally full use of your arms and full dexterity, so I mean you can kind of transfer yourself. You're in a manual wheelchair, your upper body looks totally normal, but still like six months, nine months for a quadriplegic. I mean at Craig Hospital you're lucky to get three. Wow. Now here's the difference Nine months inpatient at that hospital SPZ in Switzerland not only gives your body enough time to physically recover but it also gives you enough time to learn how to be functional. You know, for instance, you learn how to do all the transfers that you're going to need to be able to do, how to take care of yourself. They work with you to modify your home, get that done while you're in the hospital. They work with your employer to get you the reasonable modifications or accommodations that you might need. If you have the function to be able to drive, they teach you how to drive and either put adaptive equipment in your existing vehicle or help you get a vehicle that you can drive. By the time you leave SPZ, you have done the amount of work and growth, or at least planted the seeds for growth, that you would be lucky to achieve in five to 10 years at Gregg Hospital as an outpatient, coming back for yearly re-evaluations.

Speaker 2:
3:48

What that indicates is a distinct societal priority to set people with disabilities up for independent living and success from jump, as opposed to this reactive. Oh well, we're only going to pay for two months, three months, and those are for the lucky people who have good insurance, Right, you can pay for it. Right, if you're not lucky, you just kind of figure it out. And so, yeah, switzerland is one third the size of the state that I'm currently residing in. It has eight million people, Right, and it is unrealistic for us to emulate their system. It is realistic for us to emulate their values and to transpose those values into our system.

Speaker 2:
4:35

I mean, there's nothing saying that that form of health care means communism or socialism. You can have a capitalist society and free markets, so make money off of medical equipment and pharmaceuticals and what have you but set people with disabilities out for success and have a more thriving society as a result. But society has to really demand that and right now the forces that be have done a phenomenal job of dividing us along pretty much every line that exists, and when you have a situation like that, then you really can't come together for anything progressive. Coming back to advocacy, really, and the law it's yeah, you get a nice little fancy degree, you put in a lot of hard work, you work hard, but the mentality does not require a license. So how do you help people with invisible disabilities? You decide as a society that you're going to help people with invisible disabilities and you do it, and the way that takes shape is going to be unique for every country and their way of you know making these things happen legally and practically.

Speaker 1:
5:46

Yeah, what are some ways that people can prepare if they have a case? How can individuals document their disability or medical condition to strengthen their case when requesting accommodations, filing legal complaints, anything like that? What are some practical tools that they can do to help in that scenario?

Speaker 2:
6:04

Paperwork.

Speaker 1:
6:06

Darn paperwork. Every time I know I was like I got forged, of course, paperwork no.

Speaker 2:
6:12

Having a good relationship with your doctor and putting in the effort to get a good medical team.

Speaker 1:
6:18

Yeah, that's key.

Speaker 2:
6:19

Seeking out doctors that actually give a damn about you and will help you connect with resources that will put you in the best position. You have to document what your disabilities are.

Speaker 2:
6:32

Sometimes you know you have to go and have like a hearing in front of a judge and have, you know, a doctor present evidence and you get this disability determination. Social security does this, medicaid does this? It's a pain in the ass but that's how you do it. And the same thing goes for getting accommodations At school or at work. You have to have a documented disability and the really hard thing with CFSME and all these mental illnesses and invisible disabilities is that there aren't pre-existing definitions and because you can't see it, it's hard to understand it, even for doctors and you know, I've talked with doctors about this because there's always going to be people who go in and don't really have that disability and pretend to do it I mean, we saw this with ADHD.

Speaker 2:
7:25

Sometimes it's to get their hands on medication, sometimes it's to get accommodations. But yeah, that's what we're fighting against. But I think the best way to set yourself up for success is to get that cohesive medical team with specialists, and I mean this is, you know, calling out on the medical profession here to avail yourselves to help out. But it's also, I mean, it should be legal as well. I mean there should be much more transparent ways to find the ability to get that documentation. And, again, this is a societal thing, but as it exists right now, I would say, you know, just documenting your disability will lead you to the subsequent steps.

Speaker 1:
8:08

Right. Can you explain the process for filing a complaint with the Equal Employment Opportunity Commission, which is the EEOC for Disability Discrimination? Because this is kind of something that people deal with the discrimination piece of it and they're not sure what steps to take next in filing those complaints. Some of the stories I hear are heartbreaking and that's why I think this is important. What are some of those steps for filing that complaint?

Speaker 2:
8:34

I'm not as versed with the EEOC but to my knowledge I mean, I think a lot of it is you're going to have to go and file a complaint, complaint online, and and there's, unfortunately, they have discretion on which cases to take. Now their obvious strength in numbers too. So if you have a group of people that can form kind of a class, that you can go through the eeoc or other administrative agencies and actually, you know, know, file complaints to people. But I think now, like these days, everything is online. So I mean it's as simple as going on the EEOC website, finding local offices, looking up attorneys that are in your zip code who do that kind of work, and I mean it's insufficient really the process and that's the simple answer.

Speaker 2:
9:28

But I think, beyond filing complaints with the EEOC, I really think there needs to be more enforcement of not just DEI but equal opportunity in employment and we need to actually hold employers to that commitment. And I mean it felt like it was getting momentum there for a second and then COVID happened and you know there's a lot going on in the world and in the country. So but this, this gets back to having this be a priority and not prioritizing, you know, just winning at somebody else's expense. Yeah, the zero sum game has to really stop and then we can actually get to a situation where we can file with the EEOC or like not have to file with the EEOC.

Speaker 1:
10:19

That would be great. Let's just not get to that point. That would be really helpful.

Speaker 2:
10:25

Let's skip all that. But I mean, I personally I haven't filed with the EEOC and I'm not too familiar with it, to be perfectly honest, but I know that actually there was a handful of professors, women at DU law school who did file a big complaint for getting underpaid and that went through and they were awarded millions of dollars for back pay and, uh, so their credit. They all stayed and you know du is a better place for it. But yeah, I think piggybacking on finding someone to represent a group of people helps with these agencies like whatever the the cause may be yeah but if you can get a group together, then you can hold employers accountable.

Speaker 2:
11:13

Yeah, and once, once one precedent is set, then it becomes customary, and so you can expect it.

Speaker 1:
11:21

It's hard it's, I. I think part of that too is being prepared, knowing your rights, knowing your legal rights to be able to claim what you are going to claim. That's a big part of the reason why a lot of us don't advocate as much as because we don't know. We don't know what the law state, we don't know what our rights are when it comes to this. So I think it can be very challenging to kind of navigate that first step. But knowing that, I think, would, in my mind, be number one, and then kind of filling out those claims with support from people who do understand it would be key if I were to take that step. Thankfully I haven't had to do that With everything chronic illness related.

Speaker 1:
12:01

Your records are going to be the master key because for a lot of us, when you go in and you get your care, we leave the hospital, we don't access our records the way we should, we don't hold a file there. And you get your care, we leave the hospital, we don't access our records the way we should, we don't hold a file there and you have right to all of your documentation. So getting all of your documentation at the time of your visit or the time of your procedure or surgery is important and you have every right to them.

Speaker 2:
12:27

And, yeah, this is a great point. It's a massive point. The NSA has a much better path to all my personal information than I personally do. All these tech companies, social media, are gleaning information off of us in society. To get all of our documentation Right, have all of it in one place, to not have to like go to this portal than that portal. Oh no, this hospital is not in this system. I got to go over here. I feel like that is something that needs to happen either, both at the governmental level and I mean you could have you get public private partnerships all over the job these days. I mean, just create some sort of platform where you can have, like, all your medical information encrypted and then be able to access that for purposes of employment or for purposes of accommodation. We have so much paperwork these days and we're also very far beyond the filing cabinet phase of history.

Speaker 2:
13:41

So you software people out there.

Speaker 1:
13:44

Get it together. We need help. Make an app Right. Make an app.

Speaker 2:
13:48

Encrypt and integrate. If I could have some sort of virtual filing cabinet, you might want to cut this part out, so we can make a bunch of money off this idea.

Speaker 2:
14:00

But just generally speaking, you do need to have some easier way to access your information and be able to send it to different entities, whether that be your employer, whether that be the government, for purposes of health care, private health care, the IRS this really should be in one place, and then if you have just these bigger highways where you can kind of move your personal information, in a safe way Right.

Speaker 2:
14:36

I think there will be less ambiguity to it and less opportunity for hacks and breaches and all that I mean. There's just way too many siloed administrative areas where your personal information is kept, so I hope that in the future, in the near future, that becomes a lot more accessible, easier to organize and easier to transmit.

Speaker 1:
14:56

And it's your right to have your records. So if any doctor puts up a fit about your records or says they don't have them, it is your right to have your records. Some people try to charge you for your records and there are, I think, some certain ways around that. Yeah, oh, yeah, oh yeah.

Speaker 2:
15:11

Oh yeah, you're right. Yeah, there's always a fee.

Speaker 1:
15:14

There's a fee, but there's ways around it. Yeah, If you go to a provider for, say, a second opinion and you request you send your documents to them, they will oftentimes print it off for you and it will be for no fee. So there's ways around it. And that's not for everyone and that's certainly from an international standpoint. I don't know how that would work, but from the US standpoint it is still your right to obtain all your records. They belong to you. You own those records. They're on you. Are there resources and organizations you recommend for people with invisible disabilities who need legal assistance or guidance that they can get?

Speaker 2:
15:53

The Colorado Cross Disability Coalition.

Speaker 1:
15:56

Check Yep.

Speaker 2:
15:59

For sure. Disability Law Colorado, the Colorado Center for Law and Policy, ARC. There are a ton of different nonprofits. Atlantis is more of a center for independent living, but one thing that I've realized just in my short time working for a nonprofit in this space is that there needs to be more of a collaborative approach with these nonprofits and relationship, because really the key to it all the people who work in these different entities. They're really excited to work with each other and to work with the people in the government and the people in the government who write the Medicaid rules or in the legislature. I mean it makes their job easier if you have people on the advocacy front collaborating with them. So I think those names that I mentioned are obvious ones.

Speaker 1:
16:51

And those are more specific to Colorado, but I'm sure in other parts of the country there's other groups and organizations that do the same thing.

Speaker 2:
16:58

The problem is that they're all specific to. It's not a problem, but it does create more of a compartmentalization for each unique disability, each unique disability. So for mental disabilities, I'm not as well versed with those entities because I mean I'm physically a disability myself, but I do feel like there needs to be more national. I mean there's, for instance, for spinal cord injuries, there's the Christopher and Dana Reeve Foundation and I'm working to help found the Colorado Paralysis Foundation which is a chapter of the Reeve Foundation. I mean in Colorado, that's great. But I feel like there needs to be more relationships between states and nationally. And it's hard. I mean it takes a lot of organization and, like we were talking about before, each state, all the Medicaid and each state has its own issues and rules and regs for disability and avenues for advocacy. But the fact that I can't readily rattle off 10 or at least a handful, is a problem.

Speaker 2:
18:13

There are organizations like Wheels Up is one that is working on making flying more accessible for people in wheelchairs. There are people who are really pushing the congressional representatives and state people who are in charge of these carriers like Delta and United to actually make seats that fold up and widen the entrances to airplanes that you can roll in and not have to get thrown around out of your mobility device. I mean, flying is an absolute nightmare. Everybody who's in a wheelchair will immediately be able to relate to this. But there's a lot of very special purpose advocacy groups and that's one thing that's unique.

Speaker 2:
19:02

it's gotten recognized and why a lot of people in the state and regionally want our input on laws on different areas, backgrounds, having different disabilities and working together and invisible disabilities is a very new area from the advocacy standpoint and really all of this is like I was saying earlier. It's I have to pinch myself sometimes because it's all very new in terms of you know of the ADA coming out 34 years ago, but a lot of the major court cases that are having a big effect on how the ADA plays out in things like access to medical care, getting an interpreter American Sign Language interpreter in a hospital, or even for your intake for Medicaid I mean these are cases that are happening right now or happened last year, 2022, 23, 24. It's an iterative process, it's slow, but I think petitioning your governor, petitioning your representatives and petitioning federal politicians one way you do that is through advocacy groups. Another way you do that is through advocacy groups. Another way you do that is with your vote.

Speaker 1:
20:31

Yep, absolutely. I think those are all really key points to make. I love that you although you're not necessarily always in the invisible endometriosis chronic illness community you're seeing the correlation between having that team and having a good, solid foundation for your care and then your rights and understanding. Working now as a team coming together. Start your advocacy when you can start your advocacy it's never too late to advocate, it's never too late, and just starting that now will be the change that we need. Something you said we as a community need to be more proactive and not reactive, which is what our government and our laws are really essentially doing, and the system, the health system is more reactive right now. My wish would be for our society to become more proactive instead of reactive, because I think that would create a lot more of a streamlined system that benefits the people, not the dollar.

Speaker 1:
21:28

But I think it would help the big entities as well.

Speaker 2:
21:30

It would. But to your point, being reactive and sitting and waiting for something to happen, I think is not just a problem on a big societal level. It's a problem on an individual level and there's a lot of discontent and there's a lot of just kind of waiting for somebody else to do it. And then there's also a lot of discontent and there's a lot of just kind of waiting for somebody else to do it. And then there's also a lot of emphasis on right now, as long as I'm okay right now, you know tomorrow, and that's a problem. That's not good. And if you don't have the, if you live in a rural community, you're far away from you know, metropolitan centers and it's difficult for you to go get involved in advocacy groups. I mean, there are things especially with how interconnected everybody is. Everyone's living on the web these days. Be creative.

Speaker 1:
22:17

Yeah.

Speaker 2:
22:18

Be hopeful and understand that like because people are kind of like sitting back and watching everything like it's a movie that's a big opportunity for you to be a character, and so I think you know every day if people can make an effort to connect with other people, to then make other connections with other people, to then make changes in attitude, to then, make changes in policy.

Speaker 2:
22:46

It's an approach and we live in a huge country. You know, there's what like 330-something million people in the United States, but people who think on big scales are just needed. I'm going to make a really corny reference. But there's this great movie, disney movie, called Tomorrowland and it kind of focuses on this whole idea that I'm trying to convey is that people are just kind of all consuming the doom and gloom side of things and in each and every moment that they're doing that, they're giving up the opportunity to actually do something about it. The other big misconception, I think, especially when it comes to law and there's a lot of like Hollywood movies, that kind of focus on this there's always, like this dystopian you know top down, heavy handed government that needs to be overthrown, and then you know there's this hero that comes along and they take over, and then it never talks about what happens after that. But you don't need to do that right.

Speaker 2:
23:53

What I've learned really in my experience with with the law going through law school and just working in it I mean, it's not the architecture of the system that's the problem, it's the people that are the problem and it's the money that's the problem. I remember I forget what class it was somewhere in college, but there was a student from, I think it was, south korea. We were in a political science class and she just raised her hand. She's like you know, in my country, if you give a lot of money to a politician to do something that you want them to do is called bribery. What's the difference here? Well, the legal difference is in the United States, if you give money in the form of a bribe, it's called lobbying and it's considered free speech. That's protected under the Constitution and the First Amendment. So that's an an issue.

Speaker 2:
24:46

But if people can overcome the feeling that they're captured, these systems that are in place, and actually be open to having a conversation with somebody and like working together and finding other people and making changes I mean people in the government are willing to listen. You can find a lot of people that are willing to listen. You can find a lot of people that are willing to listen. And if you have grassroots movements that gain enough traction, then that's how all the major changes in law have happened in society. You've had large, small, then large groups of people come and demand change, and that's how the Civil Rights Act was passed. That's how the Environmental Protection Act was passed. That's how society progresses from a legal standpoint, but I think the change in attitudes preliminarily is the big thing.

Speaker 1:
25:38

Right, that's so true. So moral of the story today is it's not all just about the law, it's about the people who change the law to help others. I think that's being active in that decision making I think is key to changing how the system plays out. And I do think there's a lot of red tape and I definitely see it within the endometriosis community. I definitely see it with how things are formulated in our care. But it really does come down to advocacy and how we as patients push that advocacy to the point of change. And I want to encourage people. If you don't know how to get involved in advocacy, there are groups everywhere.

Speaker 1:
26:17

I'm part of a nonprofit for endometriosis advocacy. It's important to be part of that so you know what change needs to be made and just being aware of it can be impactful. Bryce, thank you so much for taking your needs to be made and just being aware of it can be impactful. Bryce, thank you so much for taking your time to sit down with me and go through all of that, and I appreciate your passion and your drive for people with disabilities, including those with invisible disabilities. I appreciate that and the work that you're doing here in Colorado will impact the greater areas of our country, so I appreciate what you're doing.

Speaker 2:
26:48

Yeah, thank you. And to your earlier point, yes, there's a lot of red tape, yes, there's a lot of legalese that you have to get through to make things happen and it seems insurmountable sometimes. But at the end of the day, the law is a reflection of societal values, plain and simple. And so there's a big need with invisible disabilities, mental illness, it's a huge need, and I think the burden is on society as a whole and on people without disabilities to say, hey, let's actually make some change. And it's not just up to those people, it's up to all of us. And I think the law becomes a lot less complicated when you just take that advocacy outlook and act. I mean it's really just that simple. And I mean we have the internet now, which is such a powerful tool of connection, and I mean, if you want to find an advocacy group for anything, you'll be able to find it pretty quickly. So it's really a decision of you know, wake up every day. And I mean do you want to consume or do you want to produce?

Speaker 1:
28:02

Right.

Speaker 2:
28:03

And you know you can do both. You can enjoy your TV shows and your content and all that. But I do think that one of the dangers is don't get lost in that. I mean there's a lot you can do individually and I wouldn't discount anybody's ability to change seemingly insurmountable obstacles or overcome insurmountable obstacles. But thank you so much for having me.

Speaker 1:
28:26

It was a pleasure.

Speaker 2:
28:27

It's been a fun conversation, so thanks, Absolutely Until next time.

Speaker 1:
28:31

Everyone continue advocating for you and for those that you love.