Donald Ryker | Panel Discussion with Cynthia Allen

Okay. Here we go. Cynthia Allen back here for our last panel discussion tonight. I’m going to introduce you to our guest in just a moment, but I do want to cover a couple of things because while this is officially the last day of the summit, we’ve been busy putting together some pretty cool stuff for you. On November 12th, so you have tomorrow, you are going to watch the rest of today’s sessions, will be your last 24 hours of today’s sessions. November 12th, we have a bonus day of live sessions, very similar to these panel discussions, where you can come in and ask questions, except you will be able to have your cameras on for these. The other ones, we’ve not been able to do that.

00:49 - At 10:00 AM Eastern time, we’ve got Dolly Menna-Dack, who’s going to be talking about Adulting With a Disability: The Road to a Meaningful Life. She’s also a bioethicist, and she’s going to be talking about some of the issues around ethics and working with children with disability. At 1:00 PM, we have Silva Laukkanen and Tanya Winters, and they’re going to be talking about dance as integration. Very lovely company out of Texas that uses dancers with all types of range of movement and capacity in their performances. At 4:00 PM, we’re going to have Anat Baniel and Martha Herbert, Dr. Martha Herbert.

01:33 - They’re going to be talking about Potentiating the Brain for Spontaneous Discovery Invention, Solutions and Potent Learning. And at 7:00 PM Eastern time, we have Carla Oswald Reed. She will be answering your questions. That’s the entire session is to give parents or people who work with children a chance to tune in and ask a very specific question about something you’re working with, with your child, or a child that’s in your life, that you would like some help with because Carla has a lot of background in making adaptations and skillful lessons that parents or caregivers can participate in. So, I hope that you’re going to be part of that. And then it’s going to turn out that we’re going to give you an encore day on November 13th because we’ve heard from so many of you that you needed another day.

02:24 - We’ll open up the entire summit for just 24 hours, and then you’ll get a chance to see whatever you missed, whatever you missed. So, I’m very happy now to introduce you to Donald Ryker. He is an artist, a brother, a son, an uncle, a service dog owner, a friend. He has artwork on display in Arizona in the Xanadu Gallery in Pinetop, and he hopes to open his own gallery in a few years. Welcome, Donald. Hi. Good to have you. And we also have here, Anthony Barnes, and Anthony- Hello. Hi. Hi.

03:01 - Anthony is here to help translate a bit for us as needed, and also knows Donald pretty well, works with him a lot. So, very nice to have you Donald. I guess I do want to start with a couple questions then I would like to show a video of you producing your artwork, and then we can go from there. Does that sound okay? Yeah. Yeah. Good. So, one of the reasons it was so interesting to ask you to be a part of this is that you are an artist, and that’s, we love creative expression, and we like to include that as part of summits. But also because you are someone who had a mother who ended up helping you explore through the Feldenkrais Method. Yeah. So, I’m going to start right off with a hard one.

03:52 - Can you say something about, what do you think, or feel, or how has the Feldenkrais Method been of value to you in your life? I think you started around the age seven? Yeah. Yeah. When I was seven, I was working with someone and they did help me with sitting up the first time. So, when he was young, he had difficulty in sitting down so a friend of his helped him sitting up with the method, right? Yeah. As I recall, tell me if this is wrong, you had a substitute physical therapist who was also trained in the Feldenkrais Method. Yes. Yes. He’s saying yes. Aha. And you got the first experience of really sitting up. Yes.

05:38 - Which is pretty darn cool, right? Yes. [crosstalk] sitting up. Fantastic. So, you continued to have a Feldenkrais work and I think also probably some of the Anat Baniel Method? Yeah. At least your growing up years. Great. Okay. Great. Okay, so we have like a little snapshot of why we’re particularly interested in you for the summit. Let me also say, his mother, Andrea Bower, was scheduled to be with us, and she’s sick. So, that’s why you see Andrea missing and you see that Anthony is stepping in to help us fill in at least some of the gaps that Donald’s unable to maybe express easily.

06:24 - So, let’s take a look at Donald’s artwork, and his process of producing art. And then we can come back and start to ask some more meaty questions. If you’ve just come for the first time tonight to a Q&A which you do, or to one of these panel discussions is you put your questions in the Q&A and then I’ll start going through them along with some questions that people submitted ahead of time with some of my own questions. So, here we go with that. It’s a video that’s about four minutes long, and I think it’s very worth watching. (silence). Okay. Let me close that window. I want to share something different with you, which is just to get a chance to see a little bit of the artworks that we’re talking about.

11:53 - So, I’ll click on just a few pictures here so we can see something a little bit larger as we saw Donald was in the process of creating in that particular one. I’m not sure, Donald, is this recent or an older one with your oranges? Older one. Older one? Older? Mm-hmm (affirmative). I’m going to click around, because I see you love animals. That’s clear. Yeah. A lot of animals. Yeah. I think these are ones that you have available for purchase on your site, and the ones that are in the art galleries are a bit different. Is that correct? Yeah. Yes. Okay.

12:39 - So, just to give you a little bit feel for that before I stop the screen-share. Good. Thank you. It’s beautiful. It’s a beautiful work, and I just really think maybe I’d like to know, is this what you dreamed about as a child? Becoming an artist? No. No. I was going to be a video editor. Okay. And so what happened? What was the moment that you thought, “I’m going to think I’m going to do art?” From video editing to art. When my teacher did say, “I think you would like painting.” Okay, so you’ve got a teacher that encouraged you. Yes. Yes. And then I… Go ahead. He said yes. He’s agreeing. Okay.

14:33 - I believe that you had a family that was pretty resourceful. Yes. Yes. And you wanted a headset but you guys couldn’t afford it so you began to get used to using the… Is it the construction hat that you were using? Yeah. Yes. Yeah, that you adapt. It’s fantastic. Okay, good. We’re going to start going through some other questions. Anthony has told me that some of these questions are things that he helps Donald answer on a regular basis.

15:16 - So, you may see sometimes Anthony answering them because they already have an answer that they use out in the public all the time. Other times, Donald will be answering and Anthony will be taking the time to translate that for us. So, just so you know what’s happening there. So, one of the questions that came in from some of the people that had sent questions ahead of time that weren’t going to be able to make it is, one was that, “Very super curious about your relationship with your mother. What do you admire her most, and what do you wish she could’ve done differently?” I think of her as a friend. He thinks of her as a friend. As a best friend. Yes.

16:28 - What do you like and what do you dislike too? None. He likes everything. There’s no dislikes there. I’ve got to tell you, that’s unusual right there. Then again, she’s going to see it later, right? Well, as parents are tuning in that are raising a child with cerebral palsy or some other types of disability, is there something that you would like to pass on that you think would be good advice for parents? Or things that you look back and you think, “Man, I sure wish that had been handled differently for me?” I think that a lot of times family want to really help their kids as much as possible, but just like kids who don’t have disability, sometimes you’ve got to let them deal with things themselves so that they can learn and be independent, because what’s really important to Don is being independent and advocating for himself. So, he advocates for himself not only with strangers, but he advocates for himself with his family. He does not have a victim… He has every reason to probably blame the world or anything for his disability but he doesn’t. He genuinely doesn’t. He accepts who he is. He accepts his disability, and he is…

One thing I like about Don, and he’s very resilient, 18:26 - okay? Of course, people can paint with their hands. Of course, some people paint on their feet on the ground. I mean, I’ve seen oil painters who do it on the ground with their feet. But he said, “You know what? I don’t care, I’m going to use my head.” He just kept on hammering away, and hammering away with this art. I think he’s mastering it. He can paint better than I can, and I have more ability mechanically than he does. It’s impressive; everybody who sees his work just loves it. I mean, I would love to see some of it in person. It shows up very well on videos as well, though, or on the site as well. Pat asked, “What is the name of the tool you use to draw with and where is it sold?” I bought a hard hat and brush, and [inaudible 00:19:29].

19:26 - Put it on? Taped it on? [inaudible 00:19:37]. Yeah. Okay. Yeah, he bought a hard hat and brush and put it on. It says on Concussion. Okay, so it’s not like a special drawing tool or a special brush. It’s just that you attach it in a special way. Is that correct? Okay. That’s correct. Okay. Sara asked, “How do you feel that your art’s been expressing what you need and want?” I believe that’s her question. How do you feel…

? She said “it’s” but I think she means art, has been expressing what 20:14 - you need and want? Good. Good? Okay. Basically, like he said earlier, he likes to draw animals and lots of [Bioscapes 00:20:26]. So, what he likes to do is he likes to make the abstract. So, if you were to look at his art on the website you’ll notice there, what? A green there. So, he kind of uses the fantasy in his mind and expresses it on a canvas. Yeah. Yeah.

20:45 - I mean, art means different things to different people so that’s a challenging question, but I think based off of what we talked of in the past, I’ve kind of accurately described what the answer to her question is. Do you have a predominant emotion that you experience while working with your art? [inaudible 00:21:13]. [inaudible 00:21:15]. People get happy when they see my art. So, the art, his main motivation is to make people feel good, enjoy. Yeah. [inaudible] it takes me time to [inaudible 00:21:50]. That’s definitely what comes through to me as joy and pleasure, yeah.

21:54 - Some people do art to feel some kind of expression of some kind of deep inner emotion. It seems like the deep inner emotion that’s coming forward for you is joy as you paint, and pleasure. Yeah. You’ve done some kind of pioneering of your art style over the last few years, haven’t you? It’s this chain. Well, first of all, do you mind telling me how old you are? 36. 36, okay. I believe you have some kind of major shift in the way, the style of your painting or your way you were doing it in the last few years.

22:37 - Could you describe something about that for us? [inaudible 00:22:40]. With the therapy with his mom, he was able to more accurately draw the contours and the lines and the shapes on the canvas. That’s an improvement with the therapy but also kind of the shift that he did have something that is called impasto glaze, which is [crosstalk 00:23:12]- It’s called what again? Impasto glaze. Impasto glaze. It’s just a combination of… What’s it? Like…? [inaudible 00:23:21]. Deeper colors, and it has a shiny thing. It’s really hard for me to describe, I’m sorry. But yeah, it is something. It is his own thing. It’s this thing that he came up with that is really unique.

23:42 - It’s something that really pops when you see it in person. Yeah. Wow. Good. So, you don’t get the same thing looking at it on a screen. You get that glazy look in person. Yeah. Okay. So, we can expect it to be much more vibrant or something [crosstalk] we’re seeing on the screen. Yeah. Do you feel like your understanding and use of the Feldenkrais Method is to help you visualize the movements that you want to explore in your art? Or does it help you improve your art in any way? Or does it just kind of in the background for you? Background. Background. In the background. So, is it like second nature now? Yeah.

24:32 - You’ve been doing it [crosstalk 00:24:33]? Yeah. He’s been doing it for a while with his mom. It’s like it’s not even a thought anymore. That’s, I mean- Yeah, that’s what I’m thinking. … he’s been doing it for so many years, like- From the age of seven, I don’t know how you would pull it apart and know what was Feldenkrais and what was your regular life. [inaudible 00:24:47]. Definitely. Yeah.

24:50 - I’m going to back up in time a little bit because a lot of the parents are wanting to understand these questions about having a younger child with cerebral palsy and what that might be. So, Yvonna asked if you would have any advice that you could share with other teens who are quadriplegic with cerebral palsy? Any advice that comes out for a teen who- You- … is quadriplegic [crosstalk 00:25:19]. … can do what you want. He said, “You can do what you want.” He demonstrates it with his art. It seems like when I read some of the parts that you’ve written on your website that this sort of resourceful spirit was really strong in you from the get go. And trying to come up with build things, do things, find unique ways, that that was something your family all supported. [inaudible 00:25:57]. His family is very supportive in his art endeavors.

26:04 - So, [Marr] asked, “How do you set up your life to live independently?” What have you got that allows your independent living situation that maybe we might not know about? Can you elaborate? Yeah, so I see that you have Anthony with you right now. Is that somebody who’s just dropped in or there someone like Anthony with you most of the time, or do you [crosstalk 00:26:39]? I have aides with me. Okay. He has aids with him. And I live by myself. He lives by himself. So, he has aids. He also has a service dog. He also has a circle of support. He actually used to live in the Bay Area, downtown San Jose. He actually lives a real life. He goes to the bars. He has a nightlife. Great. I love it. Yes. Thank you for our conceptions right there. Yeah. No, and I’m there with him. At first, when I first started working with him, it was more like I had to be off to the side, but he embraced me and it was fun. He’s got a whole network of friends.

27:41 - We moved to Stockton, California just recently. So, it’s a whole different vibe and atmosphere, and he wants to bring his art to this side. Yeah, his mom and his sister lives here in Stockton. His dad lives in the Bay Area. So, he always has the support he needs. Even though he’s independent, he still likes that network of support, and he still likes that interaction. It’s not like when he said earlier that he does things on his own, he lives on his own, it still matters to have people checking in on him and supporting him like what I do with him is on his cellphone, it’s really important.

28:29 - Internet is really important to him as I do a lot of communication via text message. So, he has a phone, he pays his own bills, right? Have you guys ever seen that movie Auxiliary with Kevin Hart? I haven’t. It’s a great movie, and it’s about a person who is limited and that’s using a motorized chair, and the other guy just assists him in his daily activities. Don completely lives his own life; just like me, just like you. He’s breaking those stereotypes of people with cerebral palsy. They can’t do anything on their own. He’s completely independent. He tells me what to do. He advocates for himself. He is his own human being.

29:21 - If I can make that any more clear, it’s absolutely true. Okay. So, you’re physically capable of spending the night by yourself. You don’t have an aide ²⁴⁄₇? You just have it during [crosstalk 00:29:35]. I do. He does. He does have an aide ²⁴⁄₇- Okay, ²⁴⁄₇. … because he needs to use- The rest- Yes, he gets assistance for things because he’s… Other than that, he can’t get out of the chair to use the restroom. That’s fine. Yeah, absolutely. That’s the kind of questions that we… So then, of course, other than your service dog and probably needing a little extra room in your apartment for your wheelchair to get around or to get in and out, the ease of getting in and out the shower, things like that, that’s the kind of standard setups in your apartment? There’s not something really super special that you needed to have? No. Not at all. Okay. Good. The only thing that’s different in his apartment than the other apartments is the size of the doors. It’s got to be accessible so that his wheelchair can get in there. So, that’s important, but other than that, his apartment is no different than any other apartments inside this development.

30:30 - Did you have a lot of pain growing up, or do you have a lot of pain now? No. Is there such a thing as something you described as a child that was like a really bad day for you? Did you have bad days that you just thought, “Gosh, I don’t know?” No. That just wasn’t you, was it? Okay. I do know, though, from talking to you that the of the things that you have an interest in is how many things we… I don’t want to say this. How many things those of us who are in care-taking relationships with someone, like a child who has a disability, are constantly come up with ways to help the child.

31:26 - You kind of have some very stark advice I heard you give out in our pre-summit talk with each other, which I thought was interesting. Would you like to share that now? Do you remember what it is? Torque his memory. It’s ask the child. He said it a couple of times. [inaudible 00:31:48]. Ask the child. So, while we were trying to problem-solve these things, Donald says, “Ask the child. Ask the child what they think, what they want.” I thought that was one of the most important things that probably we could have heard in the summit, and as a piece that I think has been, we’ve talked a lot about respect. We’ve talked a lot about acceptance.

32:14 - We’ve talked a lot about being right with the person, where they’re at, but I don’t think we’ve ever said, and to this point actually ask. Actually ask. I really, really, really, appreciate. Pat asked, “Is there anything in particular that you had as therapy or equipment as a child that helped you grow into an independent adult?” How did this independence happen for you? Was it…? I got a wheelchair when I was two. He got a wheelchair when he was two, and that was instrumental in his independence. So, the motorized wheelchair, right? Yeah. Yeah. And you’ve always been interested in building things it looked like. Yes. Yes.

33:20 - So, the idea of making your own hard hat or I would assume, other things that kind of came along [crosstalk] the creativity. Yeah. How do you recommend people do advocacy in school in particular? I don’t think you’ve been in traditional physical therapy since you were seven, is that correct? Yeah. Physical therapy or occupational therapy? Yes. But I would think you have had to advocate for yourself in school situations or in the medical realm in some way. [inaudible 00:34:05]. His mom was definitely the mouthpiece for him in school.

34:11 - From what I understand, she actually shared this story with me, is they kept on fitting him in a box of how they viewed his world. And so she just never gave up. She just kept on fighting for his rights. And even sometimes to this day, she does the same thing. Until people come to the realization that we’re all the same, for instance, Don, he’s there, up here just like all of us just with the disability. That’s the only difference. Don in his way, I guess during the painting, when people see him painting, they’re just flawed, right? That’s how he demonstrates to people that, “Hey, look, I’m not defined by my disability but I’m defined by who I am inside.” It sound good? Mm-hmm (affirmative). Yeah.

35:20 - I guess I would ask, what do you think then is the most significant ignorance or prejudice that you encounter all the time? That’s a big call. That’s loaded. Yeah. It’s loaded, so go [crosstalk 00:35:33]. That’s a lot of answers. They think I can’t think. He says, “They think I can’t think.” So, they think that there’s something wrong with his mind. He’s just like us. I would go everywhere [inaudible 00:36:11]. They help? What’s the first letter of that word? [inaudible 00:36:29]. H? A? I would go? [inaudible 00:36:34].

36:38 - Hear what they say? When you say something and I don’t go with it. Like they’re disagreeing? Or something like that? Yeah. [inaudible 00:37:09]. No, that’s not it. What? Say it… We’ve got time. We don’t have to be rushed. When the aide thinks I would do what they want. Okay. People who do what I do, right? They have this preconception that he’s supposed to just sit there and do nothing all day. They make his own schedule. They say this is what time it is to go to bed. This is what time to go out for walks.

38:08 - They feel like he doesn’t have any autonomy. So, what Don is expressing is even people that are in the industry that I’m in, they assume a lot of things about him. So, that’s one barrier that he has to break with even people in the professional field. I see that all the time. I have a lot of older clients that have people who are with them 24 hours a day and/or a significant amount. I see the same thing even in people who were always considered, quotes, “abled”, or however they would describe themselves.

38:49 - It is amazing how quickly, I don’t know what that is about but how quickly we start to categorize people into these pidgin holes as if they’re children to be cared for or … I don’t know what that is, but that’d be very hard to live with it. See, we don’t think it’s coming from a place of just like being mean. No, no, it’s not being mean. I think ultimately people just don’t understand. So, it’s our job to educate them. Advocacy, speaking up for himself. No, I don’t think they’re being mean either.

39:30 - I think they totally think they’re being helpful while actually being disabling, right? That’s a really tricky situation. It’s really tricky not to be mean to them when their heart’s in the right place. It’s just you’re limiting him. Yeah. It’s very much so. Donald, do you date or have any love interest? Is that interesting to you? Donnie, can I say? He had me open up eHarmony account, but then it’s kind of spammy. There was some interest but he just said no. He didn’t trust… There was one person that messaged him but he didn’t feel right about it so he just stopped.

40:22 - But he definitely does have interest in, like I said, at the bars. He even dances with girls, I saw him do it one time. All the girls around him, he’s in his wheelchair, smiling like grinning from ear to ear [crosstalk 00:40:38]. It’s fabulous. Yeah. It’s wonderful. I’m glad. I’m glad. So, I believe you have a particular type of new kind of modality for your art that you have been working on. Could you show us one of these that… Because I think… You guys see that? Do you mind taking it out of the plastic so we’ll be able to see without the glare? Is that okay? [crosstalk 00:41:09]. He said it’s okay. All right.

41:14 - As you guys saw on the left side, those were just prints and then the originals. This, he’s using glass blocks where it’s laser printed on these little things. So, what I’ve seen, at some of the places people buy like hundreds of them and just hang them on their wall. It looks absolutely beautiful. It’s like one of those collector things. It’s gorgeous. It’s gorgeous. So, you have original artwork that’s over, I think, a couple of thousand dollars [crosstalk] and then you’ve got prints out on your site that people can purchase. And then this is even a slightly lower priced point, I think, so that you’ve got a very wide range of how people can enjoy your art. Is that correct? Yeah.

42:02 - And then you actually have four people within the summit. You have given us a coupon code of 25% off that’ll be below the replay of the video by the way. The code and then the click over to Donald’s website. Within that, you can only use it once but you can use it towards everything that you put in your shopping cart. So, you could do like a little house redecorating or you could do your own Christmas shopping if that’s your thing.

42:38 - Can you say a little bit more about that glass process? How does that work? Can you say anything about it? How you got there? That’s from Sara, she would like [crosstalk 00:42:52]. [inaudible] it is a [inaudible 00:43:04]. [inaudible] there’s a company that he works with that puts his… Kind of like prints, it’s the same thing. So, they take his original piece, and then they actually transfer that image onto these glass blocks. And some [inaudible] I put a [inaudible 00:43:44]. [inaudible] on here? Like this right here? He puts a saying, like on these they have they have- Oh, that’s right. … these little affinity things on it.

44:03 - So, I don’t know if you can sign, I guess the name. Yeah. Can you guys see? I know the light’s kind of- I can kind of see. So, that’s the name of the person. That’s the [crosstalk 00:44:13]. Yeah, so on this side it says, “Winter knows to hush still.” You can actually read on there. Can you read what’s in all the way around then? Yeah. It says, “Listen so the soul can speak.” Then it says, “Winter knows to hush still.

” 44:30 - It says, I guess this one goes to Angie [Wilman] Cosby. So, we opened this, and this is somebody’s? I think that he wrote that. Okay. All right. Good. Okay. I had a little sneak peek about that. And then Donald’s signature is also on there. Okay. It’s also on the acrylic block as well. Yeah. Yeah. Good. Thank you so much. I think, what is it that you feel, either Anthony or Donald, that we haven’t covered that maybe we should tell people about? That maybe we’re just not intelligent enough to ask or be curious about? I just think that, I guess when you’re in public, I think just interacting with people with disabilities is huge. I don’t think you should really be scared to do it, but just do it with understanding that don’t come at them, almost just treat them like a normal person, right? Because we’re all normal.

45:44 - Well, is there such a thing as normal? When we’re out in the public, people act like they want to help him, you know what I mean? It’s like I think it’s more like it’s okay to say hi. He knows how to do his life, so just… I mean, when people are in public, it’s okay to be nice but at the same time just don’t be too overly nice. I hope you guys understand what I mean by that? Because it comes off as awkward and weird. It’s kind of presumptive I think, isn’t that? It’s kind of a presumption that the person has just been waiting for you to show up to help them, which is somewhat unlikely. I do think it’s complicated though, and you all can correct me because I’m thinking about clients that I have that tell me on a regular basis how much they appreciate that someone comes and gets the door so they can get in, or get something off of a tall area of the shelf for them.

46:43 - So, I think it’s so individual that also gets a little bit complicated for us to know, but I think it will go back to Don… You go by Don not Donald. I hear Anthony calling you Don. Can I…? Okay. It goes back to Don what you said, which is ask. Maybe instead of presuming that you need help and after saying hello or whatever, maybe saying, “Did you need any help with that door, or did you need any help with [crosstalk 00:47:21]?” Yes. That is perfect explanation of what Don likes. Perfect. Sara asked, “How do you stay positive with the challenges you have?” Sara has cerebral palsy, so I hope that’s okay, Sara, that I said that since you’ve been so present in this summit.

47:41 - That question is coming from somebody who has maybe some kind of shared experience with you. I’m not sure that anybody has a real shared experience with each other. Okay. We did actually talk a little bit about this. How he stays positive is just living life, setting goals, not being defined by your limitations but surpassing them. Don’t let people bring you down. Don is so ambitious, okay? He’s a learner too, so he’s learning a lot.

48:23 - I think that builds him up as well, so there’s a confidence that comes with just making goals. So, goal-making, like being a painter and surviving in this business, it’s very cut-throat. It takes a lot of commitment to be on this trail as an artist, because it’s just trying to be found out and actually etching your place in history. So, make your goals big, and even if you don’t hit those goals, even if you just get a little bit below it, it’s rewarding. So, I think that the thing is just he’s always making goals and he’s sticking with them.

49:10 - That’s what everybody should do, because it just builds you up. Hopefully, that answered your question. It does. I hope it answers Sara’s question. When you got your artwork, you displayed like at the Xanadu, that didn’t happen accidentally then you’re saying? You had a goal to get it displayed somewhere I’m betting. No, he advertised. He emails, phone calls. Drudgery, grit and grind. Just going out there and getting it. Okay, like everybody else. I mean, Cynthia, I know you worked really hard and you know what it is. I do know what this is. You know exactly what it is. I do know what this is. It’s just like everybody else, yeah. I know what this grind is. And then as you think about having your own art studio or gallery, I think is what you called it in the… Yeah. You’re starting to at least dream about what the steps of that might be or maybe you’re actually even further than the dreaming. Yeah. He has his own business already.

50:15 - Yeah, that’s clear that he has his own business [crosstalk 00:50:20]. He’s manifesting it right now. He makes little changes, little tweaks like moving to different places. His name is in San Jose. He goes to the college out there. You went to college? San Jose State? Or did you go to a community? Yeah. City? Okay. So, you have your associate’s, right? Yeah. Yeah, he finished a college degree in associate’s in art. Now he’s up here finding new challenges.

50:51 - He’s not afraid to make little adjustments to get where he needs to be. Now, I know you watched or read the transcripts for the four presentations today. I think the one presentation that maybe you had the most response to was [Brent Shaub’s 00:51:06] who had a problem with hearing for most of his life. I think you really mostly noticed the difference in yours, personality, and Brent’s personality, because Brent talks about really taking a lot of years before he accepted his disability or accepted help. Yes. Does that describe you? It does not describe you.

51:39 - So, even though you wouldn’t want strangers coming up and offering help and just because they feel sorry for you, I assume, you’re not also adverse to taking help. Yeah. Yeah, and although his disability is visible so he feels like it’s a little different than Brent Shaub’s. People can see it. They’re looking at him. You know what I mean? When he’s out in public. So, every disability is different, and we’ve got to accept the diversity of disability and diversity of people because everybody has their own situation. He doesn’t want to be clustered with other people.

52:22 - He respects other people and their disabilities, but he doesn’t want to feel like he’s a part of a group of disabled people, just to be straight up. Yeah. When we were in San Jose, he was really clear about that with me, that although he appreciates and understands that he’s a part of a community, he’s his own person and he doesn’t want to be defined by that community. Well, and I think that the one of the early things that you said and so many words already tonight but said to me in the pre-summit planning was that if you had a mission, which you don’t, you’re an artist and that’s what your thing is, is you’re an artist. But if you had a mission, it might be to kind of convince people like me or try to make clear to people like myself that you can do a lot. You can do a lot. Yeah. Definitely. Yeah. And that this idea of a wheelchair or anything else stopping people is mostly a fallacy. Yeah. Thank you.

53:39 - Okay, well, I’m thinking I’m going to let you guys go, and I’m going to wrap up a little bit about these other presentations because I don’t think that part was that interesting to you. So, I’m going to let you off the hook on that. And then just to let you know what a pleasure it was to have you here, both of you. I really appreciate you being with us. I think it will be very helpful to all of us to get a chance to examine our own preconceived ideas and let things bounce around in our head about what we might be assuming or… And also assuming, and for parents assuming about the future for their children that they might be assuming things that are really aren’t true about the future of their children.

54:33 - So, I think it’s very helpful what you’ve done for us here today, Don. [inaudible 00:54:38]. Okay. Thank you. Thank you. It was great. Yeah. Thank you very much. Everybody say goodbye to- [inaudible 00:54:46]. … Don, and I’ll wrap you up a little bit with these other discussions. [inaudible] bye. Okay. So, let me just get a… I do want to say something about the other discussions even though we ended up not having a normal panel talk, that was extremely powerful but also for people who’ve been using these as kind of a way to get an overview of what else has been presented during the day, because I know that some people are actually watching them in that way. These were four incredible talks again today.

55:26 - I want to start actually with Brent Shaub’s since I already mentioned him. Brent Shaub is a Feldenkrais practitioner who has a hearing challenge. He’s putting together a process. So, not only does he describe something about his journey, but he’s putting together an incredible process to help people who are either deaf or have a hearing impairment and hard of hearing, the capacity to do awareness through movement lessons online and not be sitting there watching the captions, because you can’t do awareness through movement lessons really and read the captions because you can’t stay in your own sensation. So, I think for those of us even if you don’t have someone in your life who fits the characteristics, I think watching his process around how he’s thinking about bringing lessons to this population to make them accessible, right? The whole issue of accessibility is really inspiring. We also had Carla Oswald Reed who gave, I think, one of the most practical presentations of the summit with a tremendous amount of information about what you can do with your child with cerebral palsy in a way that makes your life easier and your child’s life easier.

57:01 - I just thought it was a really incredible presentation of practicality and uses everyday life experiences for you to be able to help your child. It would apply, however, although there were some things of a very specific that we need to apply more to a child who has spasticity than in other situations, most of what she shared the principles and even a lot of the ideas are just incredibly usable. I just highly encourage it. Audrey [inaudible] oh, my gosh, that is a heart-touching, inspiring in a deep, deep way. These challenges of having a child in your life. In her case, her child lived to be in her 30s but always thought that she would die fairly young.

57:59 - And so she outlived the expectancy by quite a lot. She died a couple of years ago. I thought Audrey did a really beautiful job for parents who are either starting out or in the middle of a journey with a child where you’re very concerned about what their future might be of showing us what a rich life she and her daughter had together, and how her daughter found meaning in life and pleasure in life. And also how Audrey herself found the supports that she needed, the communities that she needed, how she has chosen to use advocacy as a way to empower herself, and how she found the strength to navigate waters that she didn’t think she would ever have the strength to. She said at one point, it’s hard. I think it’s how she said it, and it turns out it’s all okay. It was very, very wonderful for me. And then Carol Henderson has a five-point plan that she calls her After Lock [Dam 00:59:08].

59:09 - But have been getting notes from parents saying they would like more help on how to deal with their emotional state. Carol Henderson has got a huge amount in that talk on how to work with your emotions as well. And really, really powerful set of steps that you can use, whether it’s after lockdown or you’re at some stage of concern or grieving or anger or whatever, however you define that in your life around… It could be around anything really. I thought it was a really helpful five-point plan that is, of course, stated here within the context of this particular summit. So usable in that way. I’m going to look to see if anybody else has any ending comments or questions over here in the panel before I get ready to say goodbye.

00:03 - Again, I hope that you will be back with us for the bonus day sessions. They’re all going to be good, just excellent. Do the ones you can but if you’re a parent who is looking for more detailed information about what you can do with your child, Carla will be widening her scope to answer your questions beyond the issue of just cerebral palsy, but I really feel she’s got the skillset that she can probably provide an answer to almost anything coming through. And then we are going to have an encore date for you. I think on encore day we’re going to have a little closing circle together at noon on that Friday, at noon.

00:47 - So, it’ll be one where we can all see each other. [Liz Penny 01:00:50] who’s been leading our community circles is going to lead us in that. You’ll get to meet the team that’s behind the scenes, and then you’ll get a chance to share what the summit has meant for you. So, Liz Penny will be leading that. Gosh, I can’t believe it’s the last one. Thank you so much. Of course, I’m going to get to see you again on bonus day, and I’ll get to see you in the Facebook group. I will get to see you at the closing party, I hope. So, be there. Okay. Thanks, everybody. .