WEBVTT 00:00.460 --> 00:07.300 Today we celebrate our shared achievements. I know something about shared achievements because I am affected by a form of autism 00:07.300 --> 00:08.700 that doesn't allow me to speak. 00:10.200 --> 00:15.180 Elizabeth Bunker blew the crowd away with her valedictorian speech at Rawlings College. 00:16.240 --> 00:21.660 Beau often goes viral educating people about autism and apraxia from the shores of Hawaii. 00:22.060 --> 00:28.560 Shannen, you were not just beautiful. You were kind, patient, and smart. A real triple threat. 00:28.560 --> 00:35.040 It took him four nights to write that speech for his dad's wedding to his new wife. It went viral and got nine million views. 00:36.460 --> 00:39.840 There are millions of non-speakers in the United States alone. 00:40.680 --> 00:48.000 And my goal is that every single one of them at least has the option of learning to spell or type to communicate. 00:52.160 --> 00:58.380 When families come to you and say my child is spelling or typing to communicate, that is the evidence. 00:58.560 --> 01:01.180 That the spelling and typing to communicate is real. 01:01.740 --> 01:06.920 We don't need a 20-year-long, one million dollar study that says this is a real thing. 01:07.320 --> 01:10.720 You can observe a speller doing it and you know that it's working. 01:12.240 --> 01:19.720 We have non-speakers who are being denied access to letterboards and keyboards because we're being told that these things are not evidence-based. 01:20.340 --> 01:28.260 There was a time when sign language was debunked as being not authentically the deaf person's communication. 01:28.560 --> 01:31.080 A-N-R-N-E. 01:32.100 --> 01:37.480 Because non-speakers learn nothing in school, teachers are shocked at how smart we really are. 01:37.940 --> 01:38.420 Something like that. 01:38.540 --> 01:44.220 Non-speakers today are being erroneously labeled as intellectually disabled because they don't have speech. 01:44.560 --> 01:47.700 Sometimes it is the people no one imagines anything of. 01:47.800 --> 01:51.740 They just need a communication method that doesn't involve fine motor muscles. 01:52.060 --> 01:53.740 Who do the things no one can imagine. 01:53.740 --> 01:59.300 That's what spelling does by using the gross motor of the shoulder of reaching towards a keyboard or a letterboard. 01:59.480 --> 02:06.240 After 11 years of doing this and working with over a thousand non-speakers, there hasn't been a single student yet 02:06.240 --> 02:13.480 who could move their arm that couldn't get to a board that has the full 26-letter alphabet on it and spell on that board. 02:15.020 --> 02:23.460 People might think it's unusual that someone's ex-wife would help their son write this speech for the new crowd in the wedding. 02:23.460 --> 02:29.420 Those 9 million viral views, I relish those because it means that my son has been hurt. 02:30.000 --> 02:37.240 I would like to see non-speakers have the freedom to choose for themselves what methodology they want to use to express themselves. 02:37.880 --> 02:40.240 It feels like a human right to make that decision. 02:40.500 --> 02:45.260 When they can communicate, finally, people hinge on every word that they have to say. 02:45.540 --> 02:46.980 Let the revolution begin. 02:49.340 --> 02:54.380 Well, it's my honor and pleasure to be joined by some of the stars of the documentary Spellers. 02:54.860 --> 03:03.480 I'm joined right now by Elizabeth, who is also on the Interagency Autism Coordinating Committee, which is a huge honor. 03:03.660 --> 03:13.600 She's one of the autistic representatives now on that committee for Robert Kennedy Jr.'s HHS, which is just a phenomenal thing to see. 03:13.600 --> 03:20.820 She will be helped by Ginny, who will be reading some of the things that she types out as we have this conversation. 03:21.040 --> 03:31.140 Of course, I'm joined by Dawn Marie, who is the Executive Director of Spellers' Freedom Foundation. 03:32.820 --> 03:39.480 So, to begin with, what is the success of the documentary? 03:39.920 --> 03:43.040 I know that it really introduced this idea to the world. 03:43.100 --> 03:48.860 We were happy to be a part of it, but have you seen a growth in the amount of people that are using this technique? 03:49.140 --> 03:57.760 Absolutely, and launching the documentary here on the high wire was a huge kickstart to letting the world at large know that non-speakers are in there. 03:57.760 --> 03:59.780 Because a lot of parents didn't know that. 04:00.220 --> 04:02.760 That was JB's intent behind making the documentary. 04:02.960 --> 04:05.360 He was like, why did I have to hear about this from another parent? 04:05.960 --> 04:07.180 This should be in the schools. 04:07.360 --> 04:09.380 This should be in public media. 04:10.040 --> 04:16.240 Hence came the documentary, and thousands of non-speakers have actually started typing and spelling to communicate since. 04:16.760 --> 04:24.480 Which I think is part of what's going on now, is we've hit a little bit of a critical mass that it's no longer this thing that everyone was ignoring or happening off on the side. 04:24.480 --> 04:29.880 There's now thousands of spellers or typers around the world, and people are noticing. 04:30.300 --> 04:36.820 And they're asking for things, and they're asking for support from state funding sources and whatnot. 04:37.040 --> 04:38.140 And it's getting a lot of attention. 04:38.520 --> 04:40.660 Well, it's also needed to get into education, right? 04:40.820 --> 04:48.580 And to get into universities and schools, they're going to need, they have this ability, the school has to be able to work with that technique. 04:48.860 --> 04:49.800 Correct, absolutely. 04:51.360 --> 04:57.740 Elizabeth's typing her answer right now, and I just also want to say that Elizabeth did give us an opening statement that I'd love to hear. 04:58.500 --> 05:05.120 So Elizabeth typed, there are tens of thousands of us, we are a force of nature. 05:05.220 --> 05:06.500 You sure are. 05:09.000 --> 05:10.680 It's such an incredible miracle. 05:10.840 --> 05:13.820 I did skip your opening statement, Elizabeth, so let's listen to that. 05:13.820 --> 05:16.140 Del, thank you for having us. 05:16.880 --> 05:22.760 Three years ago, Highwire showed the Speller's Movie and helped us launch a revolution for non-speaker rights. 05:23.540 --> 05:29.880 Since that time, we have grown to tens of thousands of non-speakers around the world who spell and type to communicate. 05:30.860 --> 05:39.940 We have become a force for change and now the corporate interests who make money on keeping us disabled have infiltrated disability offices across the country to silence us. 05:40.560 --> 05:46.460 They want to keep giving us ABA and speech therapy for thousands of hours even when it is not working for us. 05:47.280 --> 05:50.680 They say our communication must be validated and that is illegal. 05:51.680 --> 05:57.240 The Americans with Disabilities Act gives disabled people the right to communicate in any way we choose. 05:58.280 --> 06:06.160 We have a bill in New York that affirms this right and the State Disability Office listened to the corporate interests and amended the bill to take away our rights. 06:06.160 --> 06:09.720 But we fought back and got the amended bill set aside. 06:10.600 --> 06:14.860 Now we need your help to restore the original New York communication bill of rights. 06:15.840 --> 06:20.460 This discrimination is happening across the country including California and Massachusetts. 06:21.640 --> 06:24.600 It will come to your state too if we don't stop it in New York. 06:25.540 --> 06:29.040 Families need choice and the freedom to help their children learn and grow. 06:29.900 --> 06:31.600 Communication is a human right. 06:34.600 --> 06:44.620 Now Elizabeth was valedictorian in her school which shows just how successful you can be using this ability to communicate. 06:45.900 --> 06:52.860 And so you know this story I actually I said yesterday as I was watching your promotion. 06:53.360 --> 06:59.000 I let all of my F-bombs go before I got into the show because this is why I do what I do. 06:59.000 --> 07:03.320 It's so infuriating but it happens in every part of medicine. 07:03.620 --> 07:10.080 When I you know I started my career on the daytime talk show The Doctors and people would say what did you learn doing that show. 07:10.540 --> 07:17.480 And I said that the slowest moving animal is the evolution of medicine and science. 07:18.020 --> 07:26.620 That every time I found someone that was really cutting edge really taking things to another level whether it was a surgery or a technique or being less invasive. 07:26.620 --> 07:31.540 Not only were they not those ideas not being adopted by their peers. 07:31.800 --> 07:33.380 They found themselves in lawsuits. 07:33.560 --> 07:35.860 They found their licenses under review. 07:36.140 --> 07:42.600 There's just this thing that change comes so slowly and this sounds like that exact story. 07:43.100 --> 07:47.480 So you know you say that there's I guess financial interest. 07:47.720 --> 07:52.800 There's a whole world now that makes a lot of money off of ABA therapy. 07:52.800 --> 07:58.080 Could you help me understand the difference between ABA and spellers a little bit. 07:58.340 --> 08:02.700 I mean I see there's a potential for an amazing partnership there right. 08:03.160 --> 08:07.320 I wish there wasn't a divide between ABA and spelling and typing. 08:09.320 --> 08:17.420 They because they are so trained in like for instance breaking down a task into its minute motor steps. 08:17.420 --> 08:20.740 And if you think about what it takes for a non-speaker to learn to type. 08:21.060 --> 08:28.740 They have to learn how to coordinate their vision and moving their eyes with their hand to accurately get to letters. 08:28.920 --> 08:31.420 Because until they're accurate they're not spelling anything right. 08:31.500 --> 08:32.800 They're not communicating that way. 08:33.300 --> 08:39.540 So there's this whole stage in acquisition when they're learning to type and spell where we're just teaching it's like teaching baseball. 08:39.740 --> 08:43.520 We're teaching them to get their eye on the ball and their and their swing the bat and make contact. 08:43.520 --> 08:47.480 And ABA providers could be really good at that right. 08:47.840 --> 08:52.520 What's inverse though is that in that field there tends to be a presumption of incompetence. 08:53.260 --> 08:57.720 And that they don't believe that non-speakers are intellectually in there. 08:58.080 --> 09:03.600 It's sort of like the cart before the horse or they're letting the outsides dictate what they think is going on on the inside. 09:04.340 --> 09:05.320 And that's the mismatch. 09:05.500 --> 09:11.580 So until they're willing to suspend that old belief and say look it's a motor planning disorder right. 09:11.580 --> 09:13.360 Not an intellectual disability. 09:13.360 --> 09:16.420 It has nothing to do with how their brain is functioning. 09:16.660 --> 09:20.120 It has to do with whether their brain can control their body's movements. 09:20.860 --> 09:23.580 Elizabeth started typing at five years old. 09:23.940 --> 09:25.980 So she's very proficient at it now. 09:26.340 --> 09:29.220 But it didn't look like this when she was five years old right. 09:29.580 --> 09:33.440 So there's stages that you have to go through as a new type or a speller. 09:34.220 --> 09:37.380 And even the documentary just showed everybody at the finished stage. 09:37.640 --> 09:39.160 But there's this acquisition phase. 09:39.160 --> 09:43.920 And I think that would be nice if the ABA industry would be willing to collaborate with us 09:43.920 --> 09:49.240 on let's use this billion dollar industry for the greater good of non-speakers. 09:49.720 --> 09:50.400 Elizabeth. 09:50.560 --> 09:51.520 Yeah, Elizabeth typed. 09:51.880 --> 09:55.600 We need teachers and therapists to presume competence. 09:56.180 --> 09:58.080 We are capable human beings. 09:58.860 --> 09:59.160 Wow. 10:00.660 --> 10:07.280 Thank you Jenny and Priscival for helping us communicate what Elizabeth is communicating to us. 10:07.280 --> 10:11.280 I can't imagine what it's like to you know. 10:11.380 --> 10:14.280 And so just so I can understand this if I remember correctly. 10:14.460 --> 10:20.600 Really the thought in spellers is that there's been an interruption of fine motor skills. 10:20.680 --> 10:20.860 Correct. 10:21.140 --> 10:24.140 Things that affect your tongue or even writing. 10:24.580 --> 10:30.340 But that what you've looked at is if we took gross motor skills, larger muscle movements 10:30.340 --> 10:35.560 and pointed at a letter board that they're able to make that communication easier. 10:35.560 --> 10:42.580 And so that they can show you their intellectual ability by being given an avenue through their gross motor skills. 10:42.840 --> 10:43.020 Yes. 10:43.380 --> 10:50.620 But realize too that like IQ tests or any standardized test requires proficient motor skills, right? 10:50.700 --> 10:54.700 I got to point to the right flash card or I have to put the ball in the cup. 10:54.900 --> 10:59.860 Like even those tests that are designed, these standardized exams designed to show intellect 10:59.860 --> 11:02.260 fail our non-speakers, right? 11:02.540 --> 11:02.700 Right. 11:02.840 --> 11:05.000 Because no one's teaching them the motor stuff. 11:05.000 --> 11:07.380 Like no one's teaching them in early intervention. 11:07.880 --> 11:12.060 If we took those 40 hours a week of ABA and we worked on motor planning. 11:12.760 --> 11:18.300 Like how do you learn to do all these sequenced activities with your body so that your brain can control your body? 11:18.780 --> 11:20.660 The outcomes would be amazing, right? 11:21.080 --> 11:25.900 More autonomy, more agency, more communication, all the things because that's the core deficit. 11:26.260 --> 11:27.460 But we didn't really know that. 11:27.620 --> 11:29.680 Like I mean this is maybe 10, 15 years. 11:30.000 --> 11:30.040 Yeah. 11:30.240 --> 11:32.680 You know that it's more mainstream that people know. 11:32.680 --> 11:36.220 Before that we just, we didn't know, right? 11:37.020 --> 11:37.680 Yeah. 11:38.180 --> 11:45.860 I remember one of the things that many of the parents, whether it was Jennifer or JB, they 11:45.860 --> 11:51.620 said the moment their child started communicating there was a real concern over how many things 11:51.620 --> 11:55.300 that I say and thought weren't being understood in front of my child. 11:55.460 --> 11:55.620 Right. 11:56.470 --> 12:01.460 Elizabeth just typed, non-speakers are seen as low functioning. 12:01.460 --> 12:03.100 And that is false. 12:03.660 --> 12:05.260 We are just like you. 12:06.580 --> 12:13.060 And you said something in the video, and you also said in the documentary, but that anyone 12:13.060 --> 12:16.480 who can move their arm can make this communication. 12:17.000 --> 12:18.660 I know that's hard for people. 12:19.560 --> 12:23.820 I mean there's very severe people that are self-harming, that are having all sorts 12:23.820 --> 12:29.040 of issues, but you've managed to even help individuals like that get to a place of communication. 12:29.040 --> 12:34.780 I haven't had someone yet that we haven't been able to get to a board that has the full alphabet 12:34.780 --> 12:35.520 on it, right? 12:35.560 --> 12:35.820 Okay. 12:36.040 --> 12:41.600 There are lots of typers now who are typing autonomously, meaning it's in a cradle, no 12:41.600 --> 12:44.440 one's helping it, no one's holding it as a communication partner. 12:45.780 --> 12:51.200 And those folks hopefully are helping to validate it for those spellers and typers 12:51.200 --> 12:53.240 who can't get to that level of autonomy. 12:53.240 --> 12:53.660 Right. 12:53.840 --> 12:56.900 Because they all started at the same square one, right? 12:56.900 --> 13:01.360 They all started with an alphabet board that was actually split across three boards, so 13:01.360 --> 13:06.020 the targets were really big because your eyes are actually controlled by those fine motor 13:06.020 --> 13:06.380 muscles. 13:06.880 --> 13:08.720 So we can't take that out of the equation. 13:08.900 --> 13:12.440 You have to find the letter you're looking for, which is why it takes time to learn 13:12.440 --> 13:16.320 to do this accurately, is like we can't remove all the fine motor from it, but 13:16.320 --> 13:20.460 we remove as much as we can so that we don't spend too much time learning. 13:20.660 --> 13:21.860 We get to the communication part. 13:23.780 --> 13:24.220 Yeah. 13:24.520 --> 13:24.840 I lost my camera. 13:24.840 --> 13:28.720 So let's get to what's happening now. 13:29.000 --> 13:32.020 And part of it's probably because of the success that you've had. 13:32.180 --> 13:36.040 I guess no one was paying attention when there was a hundred children doing this, 13:36.120 --> 13:39.980 but now that you're moving into tens of thousands, it's going to require 13:39.980 --> 13:43.500 change on institutions, on insurance systems, right? 13:43.660 --> 13:46.400 Or at least an understanding of what's taking place here. 13:48.400 --> 13:53.520 So Elizabeth typed, must be on the same wavelength as her. 13:54.420 --> 14:00.500 Non-speakers are being discriminated against nationwide by state agencies wanting 14:00.500 --> 14:02.920 to validate our communication. 14:04.340 --> 14:08.820 Why is it not good enough that Elizabeth is sitting here communicating right now? 14:08.980 --> 14:10.800 I mean, just, what's up with that? 14:11.360 --> 14:11.680 I know. 14:11.820 --> 14:15.740 I mean, you could, I know that you could put several spellers here that are 14:15.740 --> 14:16.280 part of the document. 14:16.460 --> 14:19.960 They've sat here together, all communicating on this stage. 14:19.960 --> 14:22.140 But they're giving, what is it? 14:22.220 --> 14:24.680 You need double blind trials or something? 14:24.960 --> 14:25.180 Allegedly. 14:25.320 --> 14:28.600 But I don't think we need a 20-year million-dollar study to prove it's 14:28.600 --> 14:29.740 working when you watch it working. 14:30.020 --> 14:30.140 Right. 14:30.600 --> 14:32.940 And even by every, you know, every field, whether it's medicine, 14:33.480 --> 14:36.560 the American Speech Hearing Association, all these different agencies 14:36.560 --> 14:40.060 have a definition of what evidence-based practice or empirically 14:40.060 --> 14:41.660 validated practice is. 14:42.240 --> 14:43.420 This meets their criteria. 14:44.020 --> 14:44.140 Yeah. 14:44.220 --> 14:47.160 There's plenty of research showing that these spellers and 14:47.160 --> 14:51.300 typers are the authors of their own work, that their intellect is intact. 14:52.140 --> 14:53.140 They just keep moving the bar. 14:53.400 --> 14:56.020 Like, they're going to keep telling people it's not validated, 14:56.340 --> 14:57.320 it's not evidence-based. 14:57.520 --> 15:01.140 When it is evidence-based, it's just a narrative that's somehow leaked out 15:01.140 --> 15:03.120 by somebody and people are buying into it. 15:03.180 --> 15:03.380 All right. 15:03.440 --> 15:04.380 So who owns ABA? 15:04.620 --> 15:06.620 Because that just sounds like giant money interest. 15:06.820 --> 15:10.280 It just sounds like the same corruption we're watching Bobby deal with. 15:10.740 --> 15:11.920 So can we name it? 15:12.020 --> 15:12.480 Who is it? 15:12.640 --> 15:13.560 Who's behind this? 15:13.880 --> 15:16.260 I mean, what I've heard is that literally hedge funds now 15:16.260 --> 15:16.920 own most of it. 15:16.920 --> 15:20.580 Like BlackRock and these big just bought into it. 15:20.580 --> 15:22.440 I mean, look, it's got to be hugely. 15:22.600 --> 15:26.960 If we are at one in 30 children now being diagnosed on the spectrum, 15:26.960 --> 15:32.420 one in 12.5 as said in California, this is a booming industry 15:32.420 --> 15:35.160 and obviously running all these kids through ABA. 15:35.380 --> 15:37.240 But ABA goes on and on. 15:37.420 --> 15:39.800 I mean, I know there's been frustrations how long it takes. 15:39.940 --> 15:40.240 Yeah. 15:40.460 --> 15:42.460 And so many of the spellers come out and say, 15:42.500 --> 15:43.940 I'm tired of being talked down to. 15:44.040 --> 15:44.260 Right. 15:44.380 --> 15:44.680 Right. 15:45.200 --> 15:47.700 That's why I keep saying there's an opportunity here, right? 15:47.900 --> 15:48.060 Yeah. 15:48.380 --> 15:51.860 If we could just presume competence and actually start teaching them motor 15:51.860 --> 15:53.800 skills, then the evidence is right there. 15:53.940 --> 15:55.520 Like you said, the kid starts learning. 15:55.660 --> 15:58.780 I say kid, the kid, the adult, the, the non-speaker starts learning 15:58.780 --> 16:00.420 to type and spell, then you see for yourself. 16:00.680 --> 16:00.840 Yeah. 16:01.200 --> 16:01.720 Elizabeth had something. 16:01.860 --> 16:02.100 Okay. 16:02.320 --> 16:06.920 So Elizabeth typed, the corporate interests want to keep us disabled. 16:07.380 --> 16:11.800 We need Secretary Kennedy to issue federal guidance to follow 16:11.800 --> 16:13.960 the Americans with Disabilities Act. 16:13.960 --> 16:14.100 Right. 16:14.680 --> 16:20.020 So what Elizabeth is saying then is that we don't need a new law. 16:20.160 --> 16:22.060 We need to adhere to the laws that exist. 16:22.340 --> 16:23.000 Sounds to me. 16:23.120 --> 16:23.260 Right. 16:23.580 --> 16:27.500 The state agencies have started ignoring the Americans with 16:27.500 --> 16:31.360 Disabilities Act, which says people are entitled to use their 16:31.660 --> 16:34.680 primary and most effective method of communication. 16:35.280 --> 16:35.740 Right. 16:35.740 --> 16:39.640 What's more effective than 26 letters, whether on an alphabet 16:39.640 --> 16:43.100 board, a keyboard, typing autonomously, like what's more 16:43.100 --> 16:43.880 effective than that? 16:43.960 --> 16:45.900 Because with 26 letters, you can say anything. 16:46.320 --> 16:46.920 Right. 16:47.200 --> 16:47.320 Yeah. 16:47.420 --> 16:49.380 So there's nothing more effective than that. 16:49.680 --> 16:53.060 It's their primary method of communication and it's their 16:53.060 --> 16:56.140 right as a disabled person to choose for themselves. 16:56.960 --> 16:59.740 Their preference, their client preference is one of the 16:59.740 --> 17:01.700 elements of evidence-based practice. 17:02.000 --> 17:05.080 So you've got families and non-speakers all saying this 17:05.080 --> 17:05.900 is what I choose. 17:05.900 --> 17:09.680 We've got federal law that says, great, you're entitled to it. 17:09.800 --> 17:09.960 Right. 17:10.120 --> 17:12.820 But then we've got state agencies sending down memorandums 17:12.820 --> 17:14.360 saying, nope, you can't do this. 17:14.500 --> 17:18.340 And blanket in California, blanket denial letters for 17:18.340 --> 17:20.060 services that involve typing or spelling. 17:20.400 --> 17:23.580 Even a camp, there's a family camp that families go to but 17:23.580 --> 17:25.260 it's called the Spelling Spellers Camp. 17:25.660 --> 17:28.100 They won't fund that either and it's a social recreational 17:28.760 --> 17:30.980 activity because the word Spellers is in the title. 17:31.080 --> 17:33.560 But by the same people that will rake me over the 17:33.560 --> 17:36.780 coals for talking about it, autism is saying autism is 17:36.780 --> 17:37.800 beautiful, which it is. 17:37.940 --> 17:40.380 For the people that are here that exist, I'm doing work 17:40.380 --> 17:42.860 trying to figure out what's making the numbers go up. 17:42.940 --> 17:44.880 Can we get on the other side of it? 17:44.940 --> 17:47.500 But obviously you're involved in making their lives 17:47.500 --> 17:50.480 better, giving an ability to communicate, to have 17:50.480 --> 17:52.580 autonomy, the ability to have a life. 17:52.900 --> 17:55.740 And these same people that keep talking about how 17:55.740 --> 17:58.760 beautiful this whole thing is are the ones stepping 17:58.760 --> 18:03.000 it seems into the way of progress. 18:03.000 --> 18:03.320 Yes. 18:03.980 --> 18:07.340 Nothing, I'll tell you, from the minute a child has this 18:07.340 --> 18:08.660 actually, let me let us first. 18:09.140 --> 18:13.360 So Elizabeth said, Elizabeth typed, we need this in 18:13.360 --> 18:17.900 New York right now where the state agency hijacked 18:17.900 --> 18:20.100 our communication bill of rights. 18:20.640 --> 18:23.540 Please join our movement for justice. 18:24.340 --> 18:25.600 Well, how do we do that? 18:25.780 --> 18:27.720 We'll get to what's happening in New York but how do 18:27.720 --> 18:29.600 we join the movement for justice while we're 18:29.600 --> 18:30.660 talking about it? 18:30.660 --> 18:32.220 There's a campaign page. 18:32.440 --> 18:34.280 We're calling it the communication is a human 18:34.280 --> 18:35.180 right campaign. 18:36.180 --> 18:38.000 It's on your screen right now everybody. 18:38.220 --> 18:40.240 If this isn't important to you then I don't know 18:40.240 --> 18:40.600 what is. 18:40.720 --> 18:42.800 We should all dive in here. 18:44.120 --> 18:44.660 And demand. 18:44.920 --> 18:47.140 I mean I just, this is one of the great 18:47.470 --> 18:47.700 travesties. 18:47.820 --> 18:50.120 Can you imagine spending your life trapped in a 18:50.120 --> 18:50.420 body. 18:50.780 --> 18:53.900 People are talking down to you, you know, all 18:53.900 --> 18:56.740 the time acting like you're, you know, a 18:56.740 --> 18:59.060 child when you're an adult, you're ready to 18:59.060 --> 19:01.860 go to college and then you finally break free. 19:02.120 --> 19:04.040 It's like the movie Awakening is only in this 19:04.040 --> 19:06.460 case it's not a physical thing. 19:06.620 --> 19:08.020 It's not the drug failing you. 19:08.360 --> 19:10.400 It's your society and it's your government 19:10.400 --> 19:13.480 and it's lobbyists that are taking away 19:13.480 --> 19:14.400 your interest in communication. 19:14.760 --> 19:17.020 I just can't think of a greater travesty 19:17.020 --> 19:17.760 really in this world. 19:18.100 --> 19:19.760 Well and you know our government has a 19:19.760 --> 19:20.620 policy on disability. 19:21.020 --> 19:23.480 Do you know it says in IDEA, the 19:23.480 --> 19:25.560 Individuals with Disabilities Education Act 19:25.560 --> 19:27.820 that it is a natural part of the human 19:27.820 --> 19:28.220 condition. 19:28.720 --> 19:30.980 That disability is natural and that it in 19:30.980 --> 19:33.840 no way diminishes a person's right to 19:33.840 --> 19:36.120 participate meaningfully in their life and 19:36.120 --> 19:36.640 society. 19:37.140 --> 19:39.860 And these state level decisions are 19:39.860 --> 19:43.020 about taking away their right to pursue 19:43.020 --> 19:46.320 happiness, inclusion, college classes, 19:46.940 --> 19:47.820 adult day programs. 19:47.940 --> 19:49.300 If they're seen in the community in 19:49.300 --> 19:51.240 California using a letter board and 19:51.240 --> 19:52.920 they're getting funding to attend that 19:52.920 --> 19:54.080 adult day program, they're getting 19:54.080 --> 19:55.940 notice of action letters to those day 19:55.940 --> 19:57.940 programs that they might shut them down 19:57.940 --> 19:58.620 and stop funding. 19:58.980 --> 20:00.220 Because they see them using the board 20:00.220 --> 20:00.600 to communicate. 20:00.600 --> 20:01.540 Because they see them using the board 20:01.540 --> 20:01.980 to communicate. 20:02.100 --> 20:03.340 They're not even teaching them there. 20:03.440 --> 20:04.720 They're not even teaching them how to 20:04.720 --> 20:05.160 use it. 20:05.220 --> 20:06.620 These are kids and adults, I'm 20:06.620 --> 20:07.360 sorry, adults. 20:07.500 --> 20:07.720 Yeah. 20:07.900 --> 20:09.620 Who are already fluent typers. 20:10.160 --> 20:11.860 Their rights are being jeopardized 20:11.860 --> 20:14.360 because of whatever the corporate 20:14.360 --> 20:15.860 interest getting into the state level. 20:17.400 --> 20:18.540 And Elizabeth typed. 20:20.620 --> 20:22.920 We need you to follow our social 20:22.920 --> 20:25.940 media campaign and amplify our voices. 20:26.180 --> 20:26.700 Okay. 20:26.920 --> 20:28.740 What is the social media handle we can 20:28.740 --> 20:29.120 use? 20:29.920 --> 20:31.740 So there's at Speller's freedom. 20:32.260 --> 20:32.340 Yeah. 20:32.580 --> 20:32.860 Okay. 20:33.120 --> 20:36.280 At communication for the number four 20:36.280 --> 20:38.920 all org, especially this month. 20:39.360 --> 20:41.940 So the more our reels get shared and 20:41.940 --> 20:44.100 reshared, the better it helps us 20:44.100 --> 20:46.120 because really, like there's a court 20:46.120 --> 20:47.160 of public opinion out there too. 20:47.160 --> 20:47.940 Yes, of course. 20:48.080 --> 20:49.520 And so what I say every day on this 20:49.520 --> 20:50.620 show, it's the most important 20:50.620 --> 20:51.220 court there is. 20:51.320 --> 20:52.620 Which is why I called you guys. 20:52.620 --> 20:52.940 Right. 20:53.380 --> 20:54.380 And I was like, please help us. 20:54.480 --> 20:55.820 Because that's it. 20:55.940 --> 20:57.680 And the world at large also needs to 20:57.680 --> 20:59.420 know and this is autism action month. 20:59.720 --> 21:01.580 And if people can help us, just 21:01.580 --> 21:03.600 even that, share those stories and 21:03.600 --> 21:05.640 share those reels so that the court 21:05.640 --> 21:06.960 of public opinion starts to hear 21:06.960 --> 21:08.940 what's happening, hopefully that will 21:08.940 --> 21:10.400 start swaying some of those state 21:10.400 --> 21:11.280 agencies. 21:11.520 --> 21:12.260 Let's bring up that social media 21:12.260 --> 21:13.600 handle again really quick. 21:13.740 --> 21:15.300 I want everyone that is watching 21:15.300 --> 21:15.800 this show. 21:15.920 --> 21:17.400 We are an action group that is 21:17.400 --> 21:18.600 why we're the informed consent 21:18.600 --> 21:20.720 action network communications for 21:20.720 --> 21:21.740 all org. 21:22.320 --> 21:24.500 I want you to follow them and then 21:24.500 --> 21:26.500 Spellers freedom. 21:27.480 --> 21:29.100 If you have social media, let's 21:29.100 --> 21:30.540 start following and sharing all 21:30.540 --> 21:31.600 these posts this month. 21:31.780 --> 21:33.260 This really will make a difference. 21:33.500 --> 21:34.880 I think we've got to show all 21:35.340 --> 21:35.880 these politicians. 21:36.080 --> 21:36.600 So what happened? 21:37.240 --> 21:39.820 Elizabeth typed, the politicians 21:39.820 --> 21:41.960 watch how loud our voice 21:41.960 --> 21:43.440 rises online. 21:44.180 --> 21:46.120 Elizabeth, you're a true warrior. 21:46.800 --> 21:48.400 I love that about you. 21:48.740 --> 21:50.040 Tell me specifically what happened 21:50.040 --> 21:50.600 in New York. 21:50.920 --> 21:52.580 So how does something like this go 21:52.580 --> 21:52.820 down? 21:52.960 --> 21:54.660 She talked about a communications 21:54.660 --> 21:56.060 bill of rights. 21:57.220 --> 21:59.240 I'm sure Elizabeth can synopsize 21:59.240 --> 21:59.440 it. 21:59.920 --> 22:02.160 She championed a bill there for 22:02.160 --> 22:03.440 the communication bill of rights 22:04.120 --> 22:06.440 and it passed unanimously in the 22:06.440 --> 22:08.060 house, unanimously, which is 22:08.060 --> 22:08.360 amazing. 22:09.040 --> 22:10.200 Then it went on to the senate 22:10.200 --> 22:11.980 and it got stuck in the senate 22:11.980 --> 22:13.920 disability committee by senator 22:13.920 --> 22:16.420 Fahey and there is where some 22:16.420 --> 22:17.960 of this influence from corporate 22:17.960 --> 22:18.940 interests must have come 22:18.940 --> 22:20.300 through because the bill got 22:20.300 --> 22:22.920 amended and it's through in the 22:22.920 --> 22:24.480 words that the communication had 22:24.480 --> 22:26.480 to be autonomous and had to be 22:26.480 --> 22:27.140 validated. 22:27.520 --> 22:29.060 If it was autonomous and validated 22:29.060 --> 22:30.760 then okay, it's covered under this 22:30.760 --> 22:32.000 communication bill of rights. 22:32.440 --> 22:33.960 But unless it's those two things, 22:34.340 --> 22:35.300 unless you can get out of the 22:35.300 --> 22:36.560 wheelchair and walk by yourself 22:36.560 --> 22:37.280 and prove yourself. 22:38.160 --> 22:39.280 Prove you can stand. 22:39.580 --> 22:41.820 It's a bad money python skit. 22:41.960 --> 22:42.360 Correct. 22:43.400 --> 22:45.220 So those words got added and 22:45.220 --> 22:47.160 then our community, this is 22:47.160 --> 22:48.480 why the social media thing is so 22:48.480 --> 22:48.760 important. 22:49.000 --> 22:51.880 Our community got on the bandwagon 22:51.880 --> 22:54.600 and flooded all of the disability 22:54.600 --> 22:56.040 committee's office with phone 22:56.040 --> 22:59.020 calls, letters, e-mails, social 22:59.020 --> 23:01.120 media posts and the bill, she 23:01.120 --> 23:02.380 rushed it through to get it passed 23:02.380 --> 23:03.840 this past Tuesday and it got 23:03.840 --> 23:04.260 tabled. 23:04.860 --> 23:06.080 It got taken off the agenda. 23:06.340 --> 23:06.360 Fahey? 23:07.240 --> 23:08.800 Sounds like a real gem. 23:09.120 --> 23:10.300 But it's not done yet, right? 23:10.680 --> 23:11.740 Still need to go back to the 23:11.740 --> 23:14.300 version that was approved by or 23:14.300 --> 23:15.580 unanimously voted on in the 23:15.580 --> 23:15.780 House. 23:15.920 --> 23:17.180 That's the version we'd like to 23:17.180 --> 23:18.120 get passed in the Senate. 23:18.620 --> 23:19.460 Go ahead, Elizabeth. 23:19.480 --> 23:21.680 So Elizabeth typed, the bill 23:21.680 --> 23:24.460 was amended to take 23:24.460 --> 23:25.560 our rights away. 23:26.240 --> 23:27.700 This is a toxic 23:27.700 --> 23:29.820 bill now, but we 23:29.820 --> 23:30.800 shall overcome. 23:32.260 --> 23:32.740 Absolutely. 23:35.560 --> 23:35.880 So 23:36.200 --> 23:38.260 New York, California, the 23:38.260 --> 23:39.680 typical states that are making 23:39.680 --> 23:41.680 life difficult on many different 23:41.680 --> 23:42.220 fronts. 23:44.840 --> 23:45.680 What is the 23:45.680 --> 23:47.040 I mean, it seems to me 23:47.040 --> 23:48.560 ABA must be fairly 23:48.560 --> 23:49.100 expensive. 23:49.260 --> 23:50.660 So it can't be a cost. 23:51.260 --> 23:53.580 I mean, these are all daily 23:53.580 --> 23:55.440 practices that require training 23:55.820 --> 23:57.620 and everything like that. 23:57.800 --> 23:59.580 Well, ABA is now covered by 23:59.580 --> 24:00.020 insurance. 24:00.780 --> 24:01.940 So it doesn't cost the family 24:01.940 --> 24:02.720 when you say cost. 24:02.960 --> 24:04.040 But that's what I mean, 24:04.120 --> 24:05.600 overall cost because the 24:05.600 --> 24:06.560 insurance should be going to 24:06.560 --> 24:07.220 spellers too. 24:07.420 --> 24:07.660 Correct. 24:07.900 --> 24:08.340 It should be. 24:08.700 --> 24:09.580 As a formal assistive 24:09.580 --> 24:10.060 technology. 24:10.640 --> 24:12.320 Because again, it meets all 24:12.320 --> 24:13.540 the criteria to be 24:13.540 --> 24:14.460 an assistive technology 24:14.460 --> 24:14.940 method. 24:15.320 --> 24:16.580 I would even assume would 24:16.580 --> 24:18.780 lead to less need for 24:18.780 --> 24:20.340 many in the future if they 24:20.340 --> 24:21.560 could communicate their needs 24:21.560 --> 24:23.300 versus needing many people 24:23.300 --> 24:24.860 to communicate for you. 24:25.020 --> 24:25.260 Totally. 24:25.800 --> 24:27.700 Think about Jen and Cade, 24:27.820 --> 24:28.640 who've been on the show 24:28.640 --> 24:29.740 and the fact that he 24:29.740 --> 24:31.680 helped the doctors discover 24:31.680 --> 24:33.020 his stage four cancer. 24:33.400 --> 24:33.560 Right. 24:33.660 --> 24:35.140 And helped the doctors 24:35.140 --> 24:36.440 navigate him through the 24:36.440 --> 24:37.560 treatment because they needed 24:37.560 --> 24:39.060 feedback, subjective feedback 24:39.060 --> 24:40.220 about are your feet numb 24:40.220 --> 24:41.160 or what's happening 24:41.160 --> 24:42.220 so they could adjust the 24:42.220 --> 24:42.680 medication. 24:43.060 --> 24:44.480 If he had not been spelling 24:44.480 --> 24:45.280 to communicate, 24:45.520 --> 24:46.340 he might not be here 24:46.340 --> 24:47.480 right now and he's serving 24:47.480 --> 24:49.180 with Elizabeth on IAC 24:49.180 --> 24:50.040 at this point. 24:50.240 --> 24:50.300 Right. 24:50.540 --> 24:51.300 So amazing. 24:51.960 --> 24:53.080 Even those, you know, 24:53.100 --> 24:53.900 you talked about earlier, 24:54.080 --> 24:54.860 those folks who are 24:54.860 --> 24:56.180 self injurious or really 24:56.180 --> 24:57.680 dysregulated and sure, 24:57.740 --> 24:58.980 it takes a minute in the 24:58.980 --> 24:59.840 beginning to get their 24:59.840 --> 25:01.740 bodies into a state of 25:01.740 --> 25:03.260 like less fight or flight 25:03.260 --> 25:04.400 so they can learn to do 25:04.400 --> 25:05.120 this motor planning. 25:05.500 --> 25:06.320 But the game, 25:06.540 --> 25:08.020 how the game changes when 25:08.020 --> 25:08.900 they can communicate 25:08.900 --> 25:10.280 what is really triggering 25:10.280 --> 25:12.040 them, it's life changing. 25:12.640 --> 25:12.820 Right. 25:13.260 --> 25:14.180 And Elizabeth typed, 25:14.700 --> 25:15.920 we don't need more 25:15.920 --> 25:16.480 funding. 25:16.940 --> 25:18.520 Families need choice to 25:18.520 --> 25:20.220 find what works for their 25:20.220 --> 25:20.880 child. 25:21.800 --> 25:23.560 Nonspeakers need to spell 25:23.560 --> 25:24.400 and type. 25:25.860 --> 25:26.900 Absolutely amazing. 25:27.300 --> 25:28.020 I want to thank you 25:28.020 --> 25:28.800 for joining me today 25:28.800 --> 25:29.840 bringing this conversation. 25:30.180 --> 25:30.840 Elizabeth, I want to 25:30.840 --> 25:31.400 give you one more 25:31.400 --> 25:31.760 opportunity. 25:31.860 --> 25:32.560 You said it before, 25:32.700 --> 25:34.480 but I want you to make 25:34.480 --> 25:35.320 a statement for Robert 25:35.320 --> 25:36.000 Kennedy Jr. 25:36.000 --> 25:36.780 Oh. 25:37.100 --> 25:38.100 And I'll make sure he gets it. 25:38.160 --> 25:38.500 Wow. 25:40.260 --> 25:40.660 Okay. 25:40.800 --> 25:42.640 And so as we sort of 25:42.640 --> 25:43.520 wrap this up, 25:43.560 --> 25:45.140 it's autism awareness month. 25:47.180 --> 25:49.440 So many families are 25:49.440 --> 25:50.500 out there that wonder, 25:50.880 --> 25:51.860 you know, I mean, 25:51.900 --> 25:52.700 I've seen this, 25:53.020 --> 25:54.300 it seems like it's 25:54.300 --> 25:55.080 hard work. 25:55.200 --> 25:55.780 I know that of the 25:55.780 --> 25:56.600 families that have been 25:56.600 --> 25:57.260 involved with it. 25:57.360 --> 25:58.380 What would be your message 25:59.260 --> 26:00.240 to people out there? 26:00.360 --> 26:01.020 I think the one I get 26:01.020 --> 26:02.760 is like they can speak 26:02.760 --> 26:03.380 a little bit. 26:03.580 --> 26:04.200 So I don't think this 26:04.200 --> 26:05.000 is going to work for me. 26:05.000 --> 26:06.060 So what would you say 26:06.060 --> 26:06.820 to those families? 26:07.300 --> 26:08.140 I really love speaking 26:08.140 --> 26:08.860 to those parents, 26:09.260 --> 26:13.260 because if the elevator 26:13.260 --> 26:14.580 pitch version is this, 26:14.760 --> 26:15.980 if your child cannot 26:15.980 --> 26:18.120 or adult child cannot carry 26:18.120 --> 26:19.680 on a conversation with you, 26:20.100 --> 26:21.940 if they cannot reliably tell 26:21.940 --> 26:23.160 you what happened today 26:23.160 --> 26:24.080 or what they did, 26:24.300 --> 26:25.840 then they can benefit 26:25.840 --> 26:27.940 from bypassing their fine 26:27.940 --> 26:28.640 motor muscles 26:28.640 --> 26:30.120 and using the gross motor 26:30.120 --> 26:31.040 of the shoulder to type 26:31.040 --> 26:31.880 and spell to communicate. 26:32.140 --> 26:32.700 Right? 26:32.900 --> 26:34.320 So it will not reduce 26:34.320 --> 26:35.280 their verbal speech. 26:35.540 --> 26:36.860 They will not stop speaking. 26:37.100 --> 26:37.780 I would think that would be 26:37.780 --> 26:38.440 a fear, right? 26:38.480 --> 26:39.300 If I do this, 26:39.380 --> 26:40.140 then I'm locking them 26:40.140 --> 26:40.920 and they're never going to 26:40.920 --> 26:41.800 get to that dream 26:41.800 --> 26:43.060 that I have of them 26:43.060 --> 26:43.960 communicating a speech. 26:44.380 --> 26:44.780 No, in fact, in fact, 26:44.880 --> 26:45.560 and we haven't studied 26:45.560 --> 26:46.640 this yet, but anecdotally, 26:47.120 --> 26:48.340 everyone's speech improves. 26:48.580 --> 26:49.820 Their articulation improves. 26:50.140 --> 26:50.700 Their reliability 26:50.700 --> 26:51.960 of their speech improves. 26:52.460 --> 26:53.100 It's like the brain 26:53.100 --> 26:53.960 doesn't know the difference 26:53.960 --> 26:55.160 between these new pathways 26:55.160 --> 26:56.160 it made for pointing 26:56.160 --> 26:56.760 to letters 26:57.140 --> 26:58.360 and making the mouth 26:58.360 --> 26:59.220 actually make 26:59.220 --> 26:59.980 the speech sounds 26:59.980 --> 27:00.720 it wants to make. 27:00.880 --> 27:02.440 So it will not reduce 27:02.440 --> 27:02.860 their speech. 27:02.860 --> 27:04.360 It could only enhance it. 27:05.080 --> 27:05.200 Yeah. 27:05.240 --> 27:06.020 So it's sort of like 27:06.020 --> 27:07.640 the juice is worth the squeeze 27:07.640 --> 27:08.920 to like give it a shot 27:08.920 --> 27:10.260 with, you know, 27:10.280 --> 27:10.940 the videos that 27:10.940 --> 27:12.420 C4A Academy puts out 27:12.420 --> 27:13.680 or finding a provider 27:13.680 --> 27:14.360 who's trained 27:14.360 --> 27:15.640 in one of the methodologies 27:15.640 --> 27:16.140 that teaches. 27:16.520 --> 27:17.160 There's many paths 27:17.160 --> 27:17.740 up the mountain 27:17.740 --> 27:18.140 where like, 27:18.200 --> 27:18.800 we don't really care 27:18.800 --> 27:19.640 which path you take. 27:19.980 --> 27:21.020 The point is give it a shot 27:21.020 --> 27:22.000 because I think it can 27:22.000 --> 27:23.660 make a world of difference 27:23.660 --> 27:24.900 in your minimal speaker 27:24.900 --> 27:25.880 and even your 27:25.880 --> 27:26.960 unreliable speaker. 27:27.620 --> 27:28.000 Amazing. 27:28.380 --> 27:28.680 Okay. 27:28.980 --> 27:29.160 Okay. 27:29.420 --> 27:29.860 Here we go. 27:30.800 --> 27:31.680 Secretary Kennedy, 27:31.680 --> 27:33.360 you are a champion 27:33.360 --> 27:35.100 for autism families. 27:35.620 --> 27:37.200 Please issue guidance 27:37.200 --> 27:39.060 to protect non-speakers 27:39.060 --> 27:39.760 from discrimination 27:41.140 --> 27:41.700 nationwide. 27:42.840 --> 27:43.400 Okay. 27:44.120 --> 27:44.960 I'll make sure 27:44.960 --> 27:46.060 that he gets that message, 27:46.320 --> 27:46.500 Elizabeth. 27:46.980 --> 27:48.500 Thank you for being 27:48.500 --> 27:49.540 so outspoken. 27:49.840 --> 27:50.180 You are 27:50.180 --> 27:51.220 incredible light 27:51.220 --> 27:51.800 in this world. 27:52.020 --> 27:52.540 Congratulations 27:53.280 --> 27:54.120 on being 27:54.120 --> 27:55.720 a member of IACC 27:55.720 --> 27:57.180 that is so spectacular 27:57.180 --> 27:57.780 and I know that 27:57.780 --> 27:58.200 you're going to make 27:58.200 --> 27:59.080 great change there. 27:59.120 --> 27:59.820 I want to thank you 27:59.820 --> 28:00.900 all for bringing this 28:00.900 --> 28:01.860 to us 28:01.860 --> 28:02.540 and let's bring up 28:02.540 --> 28:03.960 these social media platforms 28:03.960 --> 28:04.720 one more time 28:04.720 --> 28:05.200 for everybody. 28:05.840 --> 28:07.740 use this moment right now 28:07.740 --> 28:08.820 to punch it into your phone. 28:09.140 --> 28:09.480 Let's start. 28:10.260 --> 28:11.120 This is the website, 28:11.340 --> 28:13.260 SpellersFoundation.org 28:13.260 --> 28:13.920 slash communication 28:13.920 --> 28:14.880 is a human right. 28:16.520 --> 28:17.480 Let's also 28:17.480 --> 28:18.520 start following 28:18.520 --> 28:19.420 all these social media 28:19.420 --> 28:19.780 channels, 28:19.880 --> 28:21.180 communication for all 28:21.180 --> 28:21.700 org 28:21.700 --> 28:23.220 and Spellers 28:23.220 --> 28:23.820 freedom. 28:24.120 --> 28:24.760 Let's start sharing 28:24.760 --> 28:25.280 those videos 28:25.280 --> 28:26.040 because I'm sure 28:26.040 --> 28:27.680 you got a bunch 28:27.680 --> 28:28.020 coming. 28:29.060 --> 28:30.900 This is super important. 28:31.420 --> 28:31.760 Thank you 28:31.760 --> 28:32.820 for taking the time 28:32.820 --> 28:33.640 to join us today. 28:37.340 --> 28:38.740 We like to change 28:38.740 --> 28:39.700 the world on this show. 28:39.820 --> 28:40.380 That's really 28:40.380 --> 28:41.660 what this is all about. 28:42.460 --> 28:43.620 I love the fact 28:43.620 --> 28:44.620 how many people 28:44.620 --> 28:45.140 come on 28:45.140 --> 28:47.060 and leave the show 28:47.060 --> 28:47.420 and say 28:47.420 --> 28:48.340 we've never had 28:48.340 --> 28:48.740 an audience 28:48.740 --> 28:50.160 that was that involved 28:50.160 --> 28:51.540 that got involved 28:51.540 --> 28:52.320 in our social media 28:52.320 --> 28:53.260 or hit our website. 28:53.820 --> 28:54.380 You're an active 28:54.380 --> 28:54.720 community. 28:55.000 --> 28:55.540 It's really 28:55.540 --> 28:56.480 what makes it 28:56.480 --> 28:57.060 spectacular. 28:57.380 --> 28:58.220 It's one of the great 28:58.220 --> 28:59.480 things that 28:59.480 --> 29:00.460 the High Wire provides 29:00.460 --> 29:01.620 is you 29:01.620 --> 29:02.400 as an audience 29:02.400 --> 29:03.820 making a difference.