Transcript of “Rights Here, Rights Now” – Crandell Family

Produced by the disAbility Law Center of Virginia.                                                            

[INTRO]: The information provided on this podcast does not, and is not intended to, constitute legal advice. Instead, all information, content and materials available are for general informational purposes only.

[Enter Advocate host, Virginia Pharis]

[Virginia Pharis]: Welcome to Rights Here, Rights Now! A podcast about disability advocacy, and activism. I'm your Advocate host, Virginia Pharis.

[Enter Advocate host, Valerie Jones]

[Valerie Jones]: And I'm your Advocate host, Valerie Jones

[Virginia Pharis]: Every two weeks we dig into to relevant issues, current events, and avenues for self-advocacy.

[Valerie Jones]: Because someone has to!

[Virginia Pharis]: And, it might as well be us!

[Valerie Jones]:

*This podcast is produced and edited by the disAbility Law Center of Virginia, the Commonwealth’s protection and advocacy agency for disability rights.*

[Enter, once more, Valerie Jones and Virginia Pharis. ]

[Virginia]: Ok, Valerie, today we have some self-advocates joining us. We have: Jay and Joe Crandell, a father and son. Jay lives with a traumatic brain injury. And we’re going to be talking to them about, um, the support system, in Virginia, [For TBI]; We’re going to be talking about: family dynamics, families where TBI is an issue, and, we’re also going to be talking to Jay about some of his creative endevors, including, starting a podcast. J

But before we jump in, let’s check out Disability in the News!

Last week several days before the 2020 Olympics began two-time Paralympic swimmer Becca Meyers had to withdraw from the games. Becca is deaf blind and requested that her mother accompany her as her personal care aide and in all past meets this has not been an issue but with COVID19 restrictions her request was denied.  She was told by the Olympic Committee that she did not need a personal care assistant, the committee was providing one assistant to assist her and 33 other Paralympic swimmers. Becca said she was angry, disappointed, and sad to not be able to represent the USA. Becca previously won silver and bronze at the 2012 Paralympic Games in London and took home three gold medals and one silver at the 2016 games in Rio.

[Enter, Valerie Jones, again and Jay and Joe Crandell, honored guests.]

[Valerie]: So, once again, I would like to thank Jay and Joe Crandell for agreeing, being willing, to sit down and talk to DLCV about the family dynamics for people with TBI. I think a lot of these questions are very personal and specific to your family! But, we hope that this will empower loved ones to start conversations, and use (put these) communication strategies to work. Okay, so Jay, my question to you is: First and foremost, can we ask- How long you have lived with a TBI?

[Jay Crandell]: You can ask that, but, I probably won’t remember, unfortunately. Memory is my primary cognitive deficit. I’ll have to ask my dad about that. When do you think?

[Joe Crandell]: 4^th of July, 2006.

[Valerie]: And- from then- can you tell us: What brought you to dLCV?

[Joe Crandell]: Very specifically, because of the projects that Jay has been working on- He has a podcast, that we’ve been talking about, and also I have a project going on. Which is: a game that we (Jay & Joe) used to play growing up, which is being turned into a Smart Phone App. J We are [currently] paying somebody to develop it for us. And Jay includes a reference to that in his podcast. And it is getting us in trouble with social security (because they say): “Oh, you can do this one thing? That means you don’t need this anymore. Let’s yank on your benefits!” That’s’ why I called you folks, because…there’s things that made me pause there. I’m very confident that a clean cognitive test of Jay will find that his memory deficits are indeed overwhelming- preventing meaningful return to productive work.

[Jay Crandell]: Mhhmm.

[Virginia]: So, I think, for so many people, it is very common for people to find us through issues like Social Security. Like, very specific Social Security stuff. And you guys were…you know, through talking with advocate Elizabeth Horn, who’s our Social Security expert, a lot of our listeners will be familiar with her, you know, especially you guys. And so, initially, (especially), with Jay’s interest in podcasting- we thought: We gotta’ get these guys on the show. We’ve got to get some of these self advocacy stories here.

[Valerie]: I do have a question that I would like to ask. And you know, I would like to know, that is, if you don’t mind sharing how Joe got to where he is now? Like, what [exactly] cause the traumatic brain injury? If y’all don’t mind sharing?

[Jay]: I should probably address that. Uhh, um, how many years ago was it?

[Joe]: 4^th of July, 2006.

[Jay]: I was walking down the street that day, in Richmond, and I happened to catch a bullet through my head. Then, it migrated to the other side of my head, when I was hospitalized for pneumonia. The bullet was able to be removed. But, that did take out the memory areas on both sides of my brain, leading to a severe cognitive defecit in that area. Um, but, luckily, I have been able to regain the ability to walk, to read, to eat my food by mouth, pretty much everything! I was very lucky- I was injured just days before I have fallen [gotten] off of my father’s insurance coverage. Um, you know, the government insurance. And, they have been incredibly generous as far as that goes. And I’ve had a huge amount of therapy in all, many different areas. And I am so thankful that I was able to do that.

[Joe]: Jay spent 100 days over at the hospital at VCU- and he came home to a rigorous schedule of: Physical therapy, occupational therapy, and speech therapy.

[Jay]: And, my parents are quite adept, also, at in home therapy. My mom is a trained clinical social worker, and my dad, uh, was actually able to go on vacation in a way.

[Joe]: That’s true. I was able to stop work(ing) the day after he was injured. And, while my wife retired at that time, I was able to, uh, take care of Jay for a long time, and even then, go back to work a little bit part time, and then some working from home. And then, I was able to retire. I was a federal worker and now, I’ve been retired since 2012. Jay’s had 2 caregivers since day one (1).

[Jay]: Yeah. My dad was particularly adept at handling the physical side of the rehab. And my mom was fantastic about handling the cognitive rehab. She noticed that, when I was released, when I was first released from the hospital, I was unable to even recognize letters. But she noticed that when I was handed a lyrics sheet, a sheet of lyrics, you know, uh, at the hospital, that I was actually able to read along. And so then she realized that musical things were accessing the **less damaged** side of my brain. And she took that into account and started working with me, memorizing poetry that I already knew, and then, other musical type things to be able to get me to recognize letters and read again.

[Valerie]: That’s amazing.

[Joe ]: Except, I’ve just got to mention: When Jay was a little boy, when we were teaching him how to read, and we had this one book of lyrics, called, “The Tree is Nice,” & we would teach him how to read. And, in his rehab, after his injury, that was the book we used.

[Jay]: And also, you know, uh, I memorized several long segments of Edgar Allen Poe’s The Raven. J And they used that as well, to work with me, because it had the musical elements, as well as the fact that I had memorized it.

[Virginia]: So, like, it seems pretty clear to me that your parents have been very helpful & very supportive. In terms of like, dynamics: How do you balance being yourself, in developing these interests, that you already have, and new interests, with that dynamic of needing support from your parents, and, being at home?

[Jay]: Gotcha. Well, being by myself and a developing that my interests are pretty much Inseparable being at home with my parents has been the perfect place for my recovery to be by himself and has been the perfect supportive environment for developing my various passions and interests like the autobiography I’ve been working on.

[Joe]: One thing that we have tried to do is to facilitate him maintaining his connections to his good friends from his past. And, that includes..having a welcoming… We try to have, […] we try to be, a place for them to be able to visit when they can. And, he does have four of his friends that have continued to stand by him. Stand with him.

[Jay]: Some of them going all the way back to Kindergarden, even! J

[Virginia]: How do you balance wanting to encourage Jay to be himself, develop his interests, of friendships, [and also] with wanting to remain as a parent, and in protect him, and..and, I guess, still fulfilling that role as well?

[Joe]: [Brief Pause] I think it's just encourage him to maintain, and to stay in touch with his older friends. One guy in particular that has become a new friend.

[Jay]: Mmhhhmm. [In agreement.]

[Joe]: And then, we try to do activities that we can meet new people. I don’t actually think we have---

[Jay]: No we do have! We do have other social things. Like the beer club, um. There’s a whole club/crew out there.

[Joe]: (And) Active in the Local Democrats.

[Jay]: Exactly. Yep.

[Joe]: And skipping over last year- we were active in the Humane Society as dog walkers.

[Jay]: We're about to re-engage with that, actually. I’ve got it on the calendar for tomorrow to for us to go and see if we're able to walk dogs again

[Joe]: And, Jay was active in a local gym. And Jay would participate in a weekly Gentle Yoga Class. [Jay; Mhmm] And he would be the only male and the other person under 50 there! [LOL!]

[Jay]: Actually, I think it was under 40.

[Joe]: Under 40.

[Jay]: I really enjoyed the class, actually. It's really fantastic to anybody who is suffering from hemiparesis- I strongly recommend Gentle Yoga as a stretching exercise. J

[Valerie]: So, um for the both of you- With having a brain injury, OR, having a family member with a brain injury: Do you think there are stigmas associated with this, (with having a TBI)? And, if so, what do you do to remove them?

[Joe]: Hmmm. I don’t think that there’s much in the way of stigma.

[Jay]: When I'm walking down the street, or, going to, like, the store or in public places, it's… Someone doesn't look at me, and say, like, “Oh, that person has a brain injury!” it mainly would come up if I get into an extended conversation with someone and then end up meet reading the same questions and unfortunately I have a tendency to sometimes do that but otherwise I don't think I've felt too much of a stigma. Unfortunately or not.

[Joe]: And also, because of Jay’s limitations, they took away his driver’s license. He’s not going places to see other people. Without, usually it’s me, with him. He does occasionally go out, with our local friend we were talking about. [Unfortunately COVID has made that difficult.] We’ve even travelled to some places. We’ve traveled to some places- went up to NYC a couple of years ago to see Phish. But I don’t really feel much of a stigma at all. This is just a major part of my life now—as Jay’s caregiver.

[Jay]: And in fact, I had to work on not being, like… not telling people like too soon like, “Hi, my name is Jay; I got shot in the head!” That's kind of a difficult process thoroughly continue.

[Joe]: Oh. The one thing that is very difficult, that Jay has not figured out, the answer to this one is: How do you meet some of the similar aged females who are having social engagements, when you don't have a car when you don't have any money to speak of, you don't have a job, etc. J Jay hasn’t figured that one out yet

[Jay]: I had some possibilities, but I have not put it into practice! J

[Virginia]: Well, if we get any of the fan mail, I promise you we will forward them to you!! And, this wasn't originally in my prepared list of questions, but ,you keep me into it in an interesting way. And I'm wondering you know we talked about the way, the way, that you engage with your family to sort of like maintain doing just doing the things that make you happy and maintaining your interest- Do you ever find that it's a challenge to to maintain any kind of sense of Independence or do you view you know continuing to engage with your interest as independent?

[Jay]: Luckily that has not been a problem because I really these are my parents. My parents are not annoying people to hang out with all the time, luckily.

[Joe]: Yeah, the concept of independence is interesting. Because Jay has a dependent on other people for these aspects [of his life], There’s a long list of things where “I’m depenent on people for these things!” So, trying to overlay independence on what is a substantial amount of dependents is kind of complicated…

[Valerie]: So Jay, I would like to know of a, do you feel well connected to services and supports for brain injury survivors here in Virginia?

[Jay]: Unfortunately, no. [Joe- But great Doctors!!] Doctors? Yes! Those, those, {……}. {…..} Those I've been very happy with! They are generally fairly confident, and they are easy to access very approachable…

[Joe]: And ,we and we have the, what was it? MCV Richmond? And then, your brain injury doc, (main) is fairly close by here and has continued care since he (Jay) was in the hospital. So ,he is a familiar face. And this is where the speacialists come in.

[Jay]: The rehab things I’ve continued to have done have been incredibly beneficial,

[Joe]: Yeah. So, Jay hasn't had speech therapy since he was in the hospital.

[Jay]: At one point, with everything, I think I had up to 7 appointments per ` week!

[Joe]: This week, Dr. Walker prescribed time with the occupational specialist to make a rain gauge paralytic right hand has been forgetting that it's there.

[Jay]: Yeah. It’s one of those- Use it or lose it!

[Virginia]: One question that has just left but into my mind which isn't on our list but might be a good thing to end on. If it's not too out there? We can’t summarize everything at once, but: If you could make one change one Improvement to the service support system for people with traumatic brain injuries, in Virginia, what would what would you want that one change to be?

[Jay]: I think I know that for anybody who suffers from a TBI, for them to get a some sort of a sheet of paper or some sort of thing directing them to be able to get hooked into a Virginia brain injury support group. Whether it's the state level, or, a group that the hospitals or other people that are involved with that sort of thing should be handing out paper that would give that sort of information to people suffering those injuries.

[Joe]: And that’s a big question. Because, a big question! Because with a TBI, it’s so personal! You know what, everybody's different, and some up sometimes they're just way way way way different! When we started this, they told us TWO THINGS: Either Jay was going to die, or, you’re going to be a vegetable. Which was a possibility!

[Jay]: Luckily, I was able to show two fingers like one of my nurses came to me and asked me if I could show two fingers and I was able to do that showed my understand what you're saying to get my muscles to do that the nurse came and told us that Jay will be getting better. J

[Joe]: And that was, how many years ago??

[Suzanne]: Well, from being able to give a peace sign to writing your own autobiography and starting your own podcast I think it was just pretty a pretty impressive self-advocacy journey.

[Valerie]: Yes! That's it. And if people want more information about TBI’s they can go to www.---- […]

[Virginia]: Well, Jay and Joe, thank you so much for coming on!

[J&J, in unison]: Thank you for having us.

[Virginia]: And now, a DLCV highlight!

Ms. E is a woman with developmental disabilities, mental illness, and chronic health issues. Her sister told dLCV that, while at the hospital, Ms. E had been placed in seclusion, not for being at risk of hurting herself or others, but for being loud and disruptive. dLCV assisted Ms. E and her guardian in filing a human rights complaint. In their response, the hospital denied any human rights violations, instead arguing that Ms. E was placed in “open” seclusion and that being disruptive could be considered a safety threat. dLCV appealed this decision to the Local Human Rights Committee, which found that the hospital did violate Ms. E's rights by the improper use of seclusion.

[Virginia]: Thanks to Joe and Jay for joining us on the podcast today! And, again, we will have the links for Jay's creative endeavors in the show notes, if you are interested in checking those out. And thank you all for listening to this episode of Right Here Right Now brought to you by the disability Law Center of Virginia! We are available on Apple podcasts, Spotify, or wherever you get your podcast- Don't forget to subscribe, and, leave a review.

[Valerie]: If want more information about dlcv and what we do, visit us online at dlcv.org You can also find this on Facebook at the disability Law Center of Virginia or follow us on Twitter at disability law VA. And share US with your friends! Until next time- I'm Valerie

[Virginia]: And I’m Virginia. And this has been: Rights Here-

[Valerie]: Rights Now!

**End of Transcriptions**