WEBVTT 00:33.070 --> 00:35.790 Hi, welcome back to InVisible InCourage 00:35.790 --> 00:38.700 with the Invisible Disabilities Association. 00:38.700 --> 00:40.770 Today I'm here with Jake Stimell, 00:40.770 --> 00:43.530 and Jake is our volunteer of the year. 00:43.530 --> 00:45.504 So welcome, Jake. 00:45.504 --> 00:47.280 Thank you. Thank you for having me. 00:47.280 --> 00:48.660 Of course. 00:48.660 --> 00:51.110 So, when we start off, tell us a little bit about 00:52.800 --> 00:54.333 your personal health story. 00:55.560 --> 00:59.760 So, I have a neuromuscular condition. 00:59.760 --> 01:03.450 I was diagnosed with low muscle tone when I was born, 01:03.450 --> 01:07.350 which if you didn't know isn't actually a diagnosis. 01:07.350 --> 01:12.350 And then in my freshman year of college, I had a bad fall 01:13.170 --> 01:18.030 and then went for a number of MRIs from a neurologist 01:18.030 --> 01:21.900 and didn't actually come out with a diagnosis. 01:21.900 --> 01:24.128 But what can you do? 01:24.128 --> 01:26.368 And that is so common amongst 01:26.368 --> 01:29.160 people in a disabled community. 01:29.160 --> 01:32.700 Getting a diagnosis is such a tricky part. 01:32.700 --> 01:35.910 And it can be, yeah, even harder just to, 01:35.910 --> 01:37.950 it's weird when people think that we're like hoping 01:37.950 --> 01:40.380 for a diagnosis, but at least that provides some sort 01:40.380 --> 01:42.420 of information and a path forward versus, 01:42.420 --> 01:45.540 you know, just wondering and being curious. 01:45.540 --> 01:47.790 Being left in the dark is really challenging. 01:49.020 --> 01:51.090 So tell us about how you became an intern 01:51.090 --> 01:53.970 for the Invisible Disabilities Association. 01:53.970 --> 01:58.060 So I was given a fellowship by my school 01:59.640 --> 02:04.470 to go on a trip for some academic pursuit. 02:04.470 --> 02:06.480 And then I thought 02:06.480 --> 02:08.850 that going the Invisible disability rep 02:08.850 --> 02:10.590 would be a great thing to do. 02:10.590 --> 02:13.200 And I reached out on the website 02:13.200 --> 02:18.200 and Jess was very welcoming and responded right away. 02:18.360 --> 02:19.510 And it just worked out. 02:20.400 --> 02:23.103 You are definitely one of Jess's favorite people. 02:24.300 --> 02:25.850 And what college did you go to? 02:26.713 --> 02:30.180 I graduated in May from Franklin and Marshall College 02:30.180 --> 02:35.081 with a BA in Psychology and a minor in sociology. 02:35.081 --> 02:37.620 Very cool. So tell us about your internship. 02:37.620 --> 02:38.670 What did you do? 02:38.670 --> 02:41.859 So, last year I worked on the 02:41.859 --> 02:44.763 National Disability ID Initiative. 02:48.855 --> 02:52.560 I was working from home from my home in New York for most 02:52.560 --> 02:54.640 of the summer, so I was contacting 02:55.918 --> 02:58.053 state legislators across the country, 02:59.610 --> 03:04.610 having phone calls with legislators, emailing them. 03:04.737 --> 03:07.290 It was really cool. 03:07.290 --> 03:11.640 I actually helped get legislation introduced in New York, 03:11.640 --> 03:14.220 Pennsylvania, and Alabama. 03:14.220 --> 03:15.300 Wow. 03:15.300 --> 03:19.581 Yeah, and then for a week I went to Castle Rock 03:19.581 --> 03:22.440 and went through Jess's meetings with him. 03:22.440 --> 03:25.710 Went throughout his week and that was also really cool. 03:25.710 --> 03:27.030 That does sound really cool. 03:27.030 --> 03:29.433 Tell us more about the Disability ID program. 03:30.360 --> 03:35.160 So, the Disability ID program is all about, 03:35.160 --> 03:40.160 it's a voluntary disclosure on a state ID of a disability, 03:40.170 --> 03:43.740 mainly to help with interactions with law enforcement. 03:43.740 --> 03:47.203 And the whole thing started with 03:47.203 --> 03:50.700 someone getting pulled over in Ohio. 03:50.700 --> 03:54.870 The cop went over to the door to talk to the guy. 03:54.870 --> 03:58.500 The guy was fumbling around and wasn't making eye contact. 03:58.500 --> 04:01.410 The cop got him out of his car and thought he was drunk 04:01.410 --> 04:05.670 and ordered some sobriety tests and the guy just had autism 04:05.670 --> 04:08.550 and similar misunderstandings 04:08.550 --> 04:10.470 have happened throughout the country. 04:10.470 --> 04:11.303 Definitely. 04:12.450 --> 04:17.010 So how does the ID try to mitigate and help that situation? 04:17.010 --> 04:19.470 So if this person had the ID, 04:19.470 --> 04:23.700 ideally they would hand the ID to the cop or they would see 04:23.700 --> 04:26.220 the ID and they would know that they had an invisible 04:26.220 --> 04:29.910 disability and would need some sort of accommodation 04:29.910 --> 04:33.003 and hopefully would ask like, 04:34.061 --> 04:35.895 what do you need me to do? 04:35.895 --> 04:38.550 What accommodations do you need? 04:38.550 --> 04:41.575 Most states didn't want a database of 04:41.575 --> 04:46.573 what the disability actually was for privacy reasons. 04:46.573 --> 04:50.280 So, ideally the cop would just ask, 04:50.280 --> 04:52.113 what accommodations do you need? 04:53.501 --> 04:54.334 Right. That makes a lot of sense. 04:54.334 --> 04:57.480 And also for people who are uncomfortable with having 04:57.480 --> 05:01.980 that information on their license, the Invisible Disability 05:01.980 --> 05:05.100 Association has little lanyards with just an ID tag 05:05.100 --> 05:08.100 that says I have an invisible disability. 05:08.100 --> 05:12.000 And they're doing a lot of trainings at different Walmarts 05:12.000 --> 05:15.330 and different stores and hopefully different colleges 05:15.330 --> 05:19.560 and schools around the country where 05:19.560 --> 05:22.110 when you see someone wearing this badge 05:22.110 --> 05:24.990 or this name tag, it says, I need help, 05:24.990 --> 05:26.220 please feel free to ask me. 05:26.220 --> 05:27.930 'Cause a lot of people do wanna offer help, 05:27.930 --> 05:30.510 but they don't wanna become invasive. 05:30.510 --> 05:32.370 And also, sometimes you don't need help. 05:32.370 --> 05:33.540 You don't need people coming up to you 05:33.540 --> 05:36.090 and asking, how can I help? 05:36.090 --> 05:41.090 I had a similar experience with my college law enforcement 05:41.441 --> 05:44.310 or public safety and they were actually 05:44.310 --> 05:45.719 really good at handling it. 05:45.719 --> 05:50.290 I had fallen on campus and needed a ride back to my dorm 05:51.840 --> 05:54.540 and one of the public safety officers was very nice 05:54.540 --> 05:56.640 about giving me a ride back. 05:56.640 --> 05:57.540 That's so great. 05:58.830 --> 06:00.903 So tell us about how the policy worked. 06:03.181 --> 06:04.768 What was that project? 06:04.768 --> 06:08.988 So yeah, so basically I would 06:08.988 --> 06:12.120 go on LinkedIn or Facebook or Google 06:12.120 --> 06:14.550 and I would find legislators 06:14.550 --> 06:16.980 or find legislation that had been passed, 06:16.980 --> 06:18.780 look up the sponsors, 06:18.780 --> 06:22.710 and then I would contact the legislators, 06:22.710 --> 06:26.280 contact the state representatives or senators. 06:26.280 --> 06:31.027 There's a lot of non non-responsiveness in this work. 06:32.040 --> 06:34.680 And you kind of gotta be okay with that. 06:34.680 --> 06:37.535 But honestly, I was surprised at how many people 06:37.535 --> 06:39.210 did respond to me. 06:39.210 --> 06:42.180 Like I was getting calls on my personal cell phone from 06:42.180 --> 06:43.410 state representatives 06:43.410 --> 06:45.780 and like honestly, 06:45.780 --> 06:47.310 like they wanna hear from people. 06:47.310 --> 06:50.609 They wanna know what the people think the problems are 06:50.609 --> 06:52.950 because they don't know all the problems. 06:52.950 --> 06:56.746 So it lets them, it helps them do their job better. 06:56.746 --> 06:57.579 Yeah, definitely. 06:57.579 --> 07:00.090 Do you have any suggestions for people wanting to get 07:00.090 --> 07:03.030 involved and contact their legislators? 07:03.030 --> 07:05.220 Just don't be afraid. Just do it. 07:05.220 --> 07:07.517 Especially if they're your own legislators, 07:07.517 --> 07:09.930 'cause they want to help even more. 07:09.930 --> 07:12.090 'cause they want your votes. 07:12.090 --> 07:15.287 They do everything to help their constituents. 07:15.287 --> 07:18.990 I was mostly contacting people that weren't my legislators 07:18.990 --> 07:21.510 because we only have two legislators. 07:21.510 --> 07:26.370 But, so yeah, there was a lot of contacting people, 07:26.370 --> 07:28.560 a lot of being surprised with 07:28.560 --> 07:31.920 how many responses I was getting and yeah. 07:31.920 --> 07:34.830 That's so cool. So that can be so intimidating. 07:34.830 --> 07:37.290 Like do you have to know legislative speak? 07:37.290 --> 07:39.900 Do you have to be very well versed on the issues? 07:39.900 --> 07:41.804 How can you approach it? 07:41.804 --> 07:43.920 You can approach it very casually. 07:43.920 --> 07:47.820 Honestly, a lot of these, especially at the state level, 07:47.820 --> 07:51.360 these people understand that we're just ordinary people. 07:51.360 --> 07:53.130 Honestly, they're just ordinary people. 07:53.130 --> 07:57.510 Like anyone could run for state representative. 07:57.510 --> 08:00.090 It's probably not that hard. 08:00.090 --> 08:02.520 It's not as easy to actually do the job. 08:02.520 --> 08:07.520 But, yeah, it's very casual to talk to a legislator. 08:08.250 --> 08:11.310 You don't need to be well-versed in public policy 08:11.310 --> 08:14.670 or economics or political science or really anything. 08:14.670 --> 08:16.110 Very cool. 08:16.110 --> 08:17.730 You just gotta have an issue 08:17.730 --> 08:20.380 and care about it and wanna do something 08:21.270 --> 08:23.040 That is so great. 08:23.040 --> 08:25.350 So did you find it was more effective 08:25.350 --> 08:28.740 with getting calls back if you did it through email 08:28.740 --> 08:31.860 or through telephone or through letters? 08:31.860 --> 08:33.960 I really only sent emails. 08:33.960 --> 08:37.320 I mean, most of them listed a telephone number, 08:37.320 --> 08:41.520 but I was kind of afraid to call a legislator just 08:41.520 --> 08:44.424 because it's kind of daunting. 08:44.424 --> 08:47.070 And then letters, I don't know, 08:47.070 --> 08:48.600 I thought it was too old fashioned. 08:48.600 --> 08:51.930 But I think that a lot of them do appreciate letters 08:51.930 --> 08:53.880 and appreciate phone calls. 08:53.880 --> 08:55.830 But emails they appreciate also, 08:55.830 --> 08:58.380 emails will often not go to them directly. 08:58.380 --> 09:02.790 First they'll go to a legislative aide or a secretary. 09:02.790 --> 09:07.050 But if the legislative aide or the secretary thinks 09:07.050 --> 09:09.090 it's worthwhile, then they'll forward it 09:09.090 --> 09:11.310 to the representative or senator. 09:11.310 --> 09:12.840 That's very cool. And it's really important 09:12.840 --> 09:15.300 to form a bond with those aides. Correct? 09:15.300 --> 09:18.900 Yeah. I mean, I am now connected on LinkedIn with a bunch 09:18.900 --> 09:23.280 of people that, a bunch of really cool, political people, 09:23.280 --> 09:27.090 former governors and former representatives and senators. 09:27.090 --> 09:28.890 It's really cool. 09:28.890 --> 09:30.360 That is really cool. 09:30.360 --> 09:33.870 So when you send the initial email, how long would it be? 09:33.870 --> 09:35.850 Would it just be requesting a meeting? 09:35.850 --> 09:39.411 Would it be explaining the program? What would you do? 09:39.411 --> 09:42.390 So, Jess helped me formulate this email, 09:42.390 --> 09:46.200 but the email was two paragraphs, I think. 09:46.200 --> 09:49.950 What they like is having a PDF attachment 09:49.950 --> 09:51.120 with more information, 09:51.120 --> 09:53.100 'cause if they want more information, 09:53.100 --> 09:54.690 then they'll just click on that 09:54.690 --> 09:56.340 and if they don't want more information, 09:56.340 --> 09:57.570 then they won't be bothered 09:57.570 --> 09:59.165 and they won't need to look at it. 09:59.165 --> 10:02.610 Yeah. And then in other nonprofit things 10:02.610 --> 10:05.940 that I've done since, I've always recommended doing a PDF 10:05.940 --> 10:08.910 attachment, just 'cause I think for more information, 10:08.910 --> 10:10.680 it's the best way to go about it. 10:10.680 --> 10:12.480 That's a really good tip. 10:12.480 --> 10:16.380 So when one of the states was effective, 10:16.380 --> 10:18.407 you listed, was it four states that you? 10:18.407 --> 10:20.970 It was New York, Pennsylvania, and Alabama. 10:20.970 --> 10:21.803 Three states. 10:21.803 --> 10:23.550 That's great. So how much communication did you have 10:23.550 --> 10:25.700 back and forth after the initial reach out? 10:26.790 --> 10:30.510 So in Pennsylvania, there were actually a few legislators 10:30.510 --> 10:32.493 that called me or emailed me. 10:34.140 --> 10:37.680 In Pennsylvania I didn't, oh, 10:37.680 --> 10:42.420 in New York and Alabama there wasn't as much back and forth. 10:42.420 --> 10:47.082 In Alabama, Jess and I had a call with the senator. 10:47.082 --> 10:49.140 Which was pretty cool. 10:49.140 --> 10:52.320 That is so cool. An exciting opportunity. 10:52.320 --> 10:55.920 Yeah. And it was, honestly, it was, 10:55.920 --> 10:59.340 it supported the whole, like that disability rights 10:59.340 --> 11:02.430 is a nonpartisan movement. 11:02.430 --> 11:04.290 The one in Alabama was a Republican 11:04.290 --> 11:06.450 and I think the other two are Democrats. 11:06.450 --> 11:10.399 That is very cool. That also makes it less intimidating. 11:10.399 --> 11:13.503 Very cool. So what other nonprofit work have you done? 11:14.640 --> 11:18.300 So currently I am a summer research intern at 11:18.300 --> 11:19.813 Understood. 11:19.813 --> 11:24.780 We are researching organizations within the learning 11:24.780 --> 11:28.260 and thinking difference field. 11:28.260 --> 11:29.850 Yeah. It's pretty cool. 11:29.850 --> 11:34.380 And I'm learning about like strategic ways 11:34.380 --> 11:38.070 to do your research and how to stretch your brain even more. 11:38.070 --> 11:41.100 And then also just the non-profit side of stuff. 11:41.100 --> 11:43.440 That is really cool. I know going through college, 11:43.440 --> 11:47.220 I use the disability office very frequently 11:47.220 --> 11:48.243 for accommodations. 11:49.197 --> 11:51.747 So what have you learned with working through that? 11:53.430 --> 11:56.073 Just that creativity is really good. 11:57.660 --> 12:01.500 They formulated a group of interns with diverse, 12:01.500 --> 12:03.207 very diverse experiences 12:03.207 --> 12:06.540 and they really push us to be creative in what we do 12:06.540 --> 12:10.920 and not just go with the organizations that are clearly for 12:10.920 --> 12:13.860 people with learning disabilities, but to stretch it 12:13.860 --> 12:15.670 and think, well this organization 12:17.070 --> 12:19.110 could care about learning disabilities 12:19.110 --> 12:22.830 because they care about education or human potential 12:22.830 --> 12:26.040 or a list of fields topics. 12:26.040 --> 12:27.780 That is so cool. It's so needed. 12:27.780 --> 12:31.170 So many people, professors, teachers, they want to help 12:31.170 --> 12:34.740 but they really have no idea where to start. 12:34.740 --> 12:37.350 And even students, they know that they could use help, 12:37.350 --> 12:40.593 but yeah. Where do we start? 12:40.593 --> 12:43.380 I think a lot of students go, 12:43.380 --> 12:45.210 a lot of students go throughout their lives 12:45.210 --> 12:46.440 without a diagnosis. 12:46.440 --> 12:48.030 And that's the toughest thing. 12:48.030 --> 12:51.120 But it's also 12:51.120 --> 12:53.250 like, yeah. 12:53.250 --> 12:56.010 It's just, it's hard to get a diagnosis sometimes. 12:56.010 --> 12:59.160 Absolutely. And it's also really difficult when you 12:59.160 --> 13:02.070 go through different school systems that don't have a lot 13:02.070 --> 13:05.760 of resources and so many people really get left behind 13:05.760 --> 13:08.880 because they're not properly accommodated for. 13:08.880 --> 13:11.160 There's also just not enough knowledge on some 13:11.160 --> 13:13.320 of these learning disabilities 13:13.320 --> 13:17.130 and that hurts the field. 13:17.130 --> 13:18.630 So much. 13:18.630 --> 13:22.770 So if you were a student with a learning difference 13:22.770 --> 13:25.620 or a learning disability, what would your approach be? 13:25.620 --> 13:28.933 How would you speak up and ask for help? 13:28.933 --> 13:31.645 I mean, the best is the best thing is to be proactive. 13:31.645 --> 13:35.100 Like you said, go go to the disability office. 13:35.100 --> 13:40.100 'cause they care there, that's their job, right? 13:40.200 --> 13:42.390 I mean, yeah, I get it. Professors are supposed 13:42.390 --> 13:44.700 to care also, but they don't always care as much 13:44.700 --> 13:46.653 or they don't know how to care as much. 13:47.550 --> 13:49.623 So just be proactive. 13:53.366 --> 13:55.293 Don't be afraid to be assertive. 13:58.260 --> 14:01.743 One student that I spoke to when I was in college, 14:03.690 --> 14:06.330 she was talking about how she would always, 14:06.330 --> 14:10.380 how she was scared sometimes to like go 14:10.380 --> 14:12.360 to her professors and like, 14:12.360 --> 14:14.340 Definitely intimidating. 14:14.340 --> 14:18.090 Yeah. And like threaten her like legal rights. 14:18.090 --> 14:21.540 But like, you gotta, you gotta be prepared 14:21.540 --> 14:24.073 to do that even though it can be daunting. 14:24.073 --> 14:26.010 I agree. I definitely think so. 14:26.010 --> 14:28.590 And along with going to either the school counselor 14:28.590 --> 14:31.350 or the disabilities office, I would definitely try 14:31.350 --> 14:33.600 to set up a meeting before the semester 14:33.600 --> 14:38.003 or you know, whatever with each teacher and each professor. 14:38.003 --> 14:38.836 Do it early. Do it early. 14:38.836 --> 14:39.750 Oh, absolutely. 14:39.750 --> 14:41.640 Right before a test. 14:41.640 --> 14:44.020 They usually are a lot less sympathetic 14:45.240 --> 14:48.900 and really just explain what's going on. 14:48.900 --> 14:51.180 You don't have to list your diagnosis if you don't want to, 14:51.180 --> 14:53.340 but just say for example, 14:53.340 --> 14:55.680 I would get really nauseated while reading. 14:55.680 --> 15:00.680 So having books on tape would help me a lot. 15:00.981 --> 15:03.999 And I would explain that and I would also explain 15:03.999 --> 15:07.860 what they could provide for me and to do to make it easier. 15:07.860 --> 15:09.690 Because again, a lot of them want to help, 15:09.690 --> 15:11.970 but they just don't know how. 15:11.970 --> 15:14.752 Right. It's the same thing as the workplace. 15:14.752 --> 15:16.990 Like if you don't feel comfortable 15:17.850 --> 15:20.340 saying your diagnosis, then just don't, 15:20.340 --> 15:24.000 but be forward about the accommodations that you need. 15:24.000 --> 15:26.250 Definitely. And of course you will get some 15:26.250 --> 15:29.910 people that will either not be able to accommodate you 15:29.910 --> 15:32.024 or they just won't care enough... 15:32.024 --> 15:33.301 Or they won't believe you. 15:33.301 --> 15:34.833 Yeah, exactly. Especially with, especially 15:34.833 --> 15:36.672 with invisible disabilities. 15:36.672 --> 15:38.324 Absolutely. 15:38.324 --> 15:43.320 If you don't go into an interview in a wheelchair, 15:43.320 --> 15:45.510 then sometimes they won't believe 15:45.510 --> 15:47.013 that you need anything or they won't, 15:47.013 --> 15:49.410 they won't think to offer it. 15:49.410 --> 15:50.850 Absolutely. 15:50.850 --> 15:53.720 Do you have any tips on that kind of situation? 15:53.720 --> 15:57.090 It really makes me mad when I see on job postings. 15:57.090 --> 16:00.480 Like, if you need accommodations for the interview, 16:00.480 --> 16:02.073 please request them. 16:02.073 --> 16:03.960 Like that shouldn't be how it is. 16:03.960 --> 16:06.510 It should be asking you 16:06.510 --> 16:08.310 because if you're going out 16:08.310 --> 16:11.700 and requesting them yourself, then it means that you've kind 16:11.700 --> 16:14.330 of already outed yourself as someone that is going 16:14.330 --> 16:18.180 to need accommodations and yeah. 16:18.180 --> 16:21.420 Right. And while obviously it's illegal not to hire 16:21.420 --> 16:23.940 someone because of that, it's still intimidating 16:23.940 --> 16:27.369 and you don't know what's hiding behind the scenes. 16:27.369 --> 16:28.338 Right, right. 16:28.338 --> 16:31.260 So what are some accommodations either at school 16:31.260 --> 16:34.140 or work that you've learned through this program 16:34.140 --> 16:36.340 that other people might just not know about? 16:37.770 --> 16:40.080 Well, like I am so working right now. 16:40.080 --> 16:42.974 I've been working on a standing desk most of today. 16:42.974 --> 16:43.807 Oh, very good. Yeah. 16:43.807 --> 16:47.801 And standing desks are very, very 16:47.801 --> 16:50.574 prevalent in today's society. 16:50.574 --> 16:54.690 A lot of corporate offices all have standing desks. 16:54.690 --> 16:59.100 Not only for disability, for accommodations, 16:59.100 --> 17:02.100 but because they think it's actually best business. 17:02.100 --> 17:05.883 Definitely. That's really cool. I love that. 17:07.410 --> 17:09.930 Would you suggest going in with accommodations 17:09.930 --> 17:12.420 that would already, that would help you specifically 17:12.420 --> 17:13.620 before having these meetings 17:13.620 --> 17:16.710 and take some time to jot them down beforehand? 17:16.710 --> 17:18.840 I mean, you should always have them in mind, I think, 17:18.840 --> 17:22.830 but it is a process that you go 17:22.830 --> 17:24.888 with the supervisor. 17:24.888 --> 17:28.553 And with their input as well. 17:28.553 --> 17:32.310 So tell us more about the struggle 17:32.310 --> 17:34.110 of not having a diagnosis. 17:34.110 --> 17:36.480 Diagnosis process is exhausting. 17:36.480 --> 17:39.427 And so many people are either not diagnosed 17:39.427 --> 17:41.550 or they're only partially diagnosed. 17:41.550 --> 17:45.030 And that can really change people's one, believing you 17:45.030 --> 17:47.163 and two, just receiving proper care. 17:48.450 --> 17:52.410 I mean, yeah, going into any social situation, 17:52.410 --> 17:56.340 it's harder to say that you have this condition 17:56.340 --> 17:57.990 that you don't really know what it is 17:57.990 --> 18:00.137 than to be able to say what it is, 18:00.137 --> 18:01.773 'cause you know what it is. 18:03.900 --> 18:07.593 I mean, any, any situation that you find yourself in, 18:10.616 --> 18:11.449 you gotta be comfortable 18:11.449 --> 18:14.490 and tell and say what's going on 18:14.490 --> 18:17.250 and what you need to be successful. 18:17.250 --> 18:18.300 Definitely. 18:18.300 --> 18:22.110 So what inspired you to go from your private experience into 18:22.110 --> 18:24.843 all of these nonprofits and public advocacy? 18:26.790 --> 18:30.993 Just wanting to help people, wanting to advance the cause. 18:30.993 --> 18:34.560 I've always thought of myself as someone with a disability, 18:34.560 --> 18:39.450 but someone that was pretty, that that was able 18:39.450 --> 18:44.283 to do a lot despite, like despite what I deal with. 18:45.604 --> 18:46.980 Like, it doesn't prevent me that much. 18:46.980 --> 18:48.180 So I should go out 18:48.180 --> 18:52.140 and help people who it does prevent them more. 18:52.140 --> 18:52.973 That's great. 18:53.880 --> 18:56.730 What are some misconceptions about either disabilities 18:56.730 --> 18:59.520 as a whole or specifically invisible disabilities 18:59.520 --> 19:01.120 that you would like to clear up? 19:02.428 --> 19:05.067 The big one, there's a big one that that like, 19:06.780 --> 19:07.770 like not understanding, 19:07.770 --> 19:10.830 that disabilities manifest themselves in different ways. 19:10.830 --> 19:13.320 Even the same diagnosis can manifest 19:13.320 --> 19:14.910 itself in different ways. 19:14.910 --> 19:17.880 And I think that it, like let's say 19:17.880 --> 19:21.240 for example, you go into a job and you say you 19:21.240 --> 19:22.710 and you have cerebral palsy. 19:22.710 --> 19:24.930 Like they won't, like, they might not believe you 19:24.930 --> 19:27.270 because you don't look like you have it, 19:27.270 --> 19:29.550 but like, that's not how it is 19:29.550 --> 19:33.030 because it manifests itself in different ways. 19:33.030 --> 19:36.720 And then just like, just like 19:36.720 --> 19:40.740 being flexible, like understanding that there's a ton 19:40.740 --> 19:42.665 of things that people deal with 19:42.665 --> 19:47.580 and just that everyone needs supports 19:47.580 --> 19:48.933 for them to be successful. 19:49.832 --> 19:51.300 I definitely agree with that. 19:51.300 --> 19:54.120 And like you said, with the disabilities being on a range, 19:54.120 --> 19:57.210 even within the same disability, 19:57.210 --> 19:59.520 I work a lot with the migraine community 19:59.520 --> 20:02.430 and every once in a while you'll see comments like you don't 20:02.430 --> 20:05.100 have migraine because if you were in a migraine attack, 20:05.100 --> 20:07.020 you wouldn't be able to be on the computer 20:07.020 --> 20:09.180 or you wouldn't be able to go outside. 20:09.180 --> 20:10.500 And that's just not true. 20:10.500 --> 20:12.750 And it's contributing more stigma even inside 20:12.750 --> 20:14.730 of our community than outside. 20:14.730 --> 20:16.980 You don't understand what other people are going through. 20:16.980 --> 20:18.423 So just believe them. 20:20.921 --> 20:22.410 And it's can only help people that way. 20:22.410 --> 20:23.490 And it can only help yourself. 20:23.490 --> 20:26.190 There's no sense in trying to judge other people for 20:26.190 --> 20:28.110 what you would've been in that situation 20:28.110 --> 20:32.070 because you really don't know, which is honestly 20:32.070 --> 20:34.680 what the disability community is trying to get the 20:34.680 --> 20:36.900 outside world to believe anyway. 20:36.900 --> 20:39.780 So having it internalized is horrible 20:39.780 --> 20:41.643 and just really impedes progress. 20:43.507 --> 20:47.640 So what other kind of advocacy do you do? 20:47.640 --> 20:50.640 So earlier this year, 20:50.640 --> 20:53.010 like earlier in the pandemic, 20:53.010 --> 20:56.637 I was assisting two organizations with 20:56.637 --> 21:00.450 ADA 30th anniversary celebrations reaching out 21:00.450 --> 21:04.173 and trying to get other people involved with them. 21:05.819 --> 21:06.953 That was just this week? 21:06.953 --> 21:07.950 Yeah. 21:07.950 --> 21:10.620 So what kind of celebrations did you have planned? 21:10.620 --> 21:12.773 Like what was involved with that? 21:12.773 --> 21:15.030 I mean, it was all virtual at this point, 21:15.030 --> 21:19.110 but just, yeah, but just, just, I don't know. 21:19.110 --> 21:21.420 There were musical celebrations, 21:21.420 --> 21:25.560 there were a lot of talks going on about advocacy, 21:25.560 --> 21:30.329 about employment, about a whole range of things. 21:30.329 --> 21:32.067 So what does the ADA mean to you 21:32.067 --> 21:34.893 and what progress do you believe still means to be done? 21:35.868 --> 21:37.710 The ADA is very powerful. 21:37.710 --> 21:42.330 The ADA lays out that it's illegal 21:42.330 --> 21:45.480 for people to discriminate, but it still happens. 21:45.480 --> 21:47.163 There's still a lot of stigma. 21:48.172 --> 21:52.350 There's gotta be, where we need to move forward 21:52.350 --> 21:57.350 is to establish a level of understanding 21:57.961 --> 22:00.390 that just because you don't see something 22:00.390 --> 22:01.890 is that it's not there. 22:01.890 --> 22:03.210 I don't know how you can do that 22:03.210 --> 22:04.503 with legislation though. 22:05.460 --> 22:10.110 Legislation doesn't always get you to where you wanna be. 22:10.110 --> 22:12.210 Definitely, definitely. 22:12.210 --> 22:14.940 What has been the hardest part of your journey 22:14.940 --> 22:16.563 or your advocacy work? 22:17.490 --> 22:18.323 Both. 22:19.590 --> 22:24.540 Hmm. The hardest part of my advocacy work has just been 22:24.540 --> 22:27.990 that, well, honestly, in the past few months, like, 22:27.990 --> 22:30.450 that advocacy doesn't always lead to a job. 22:30.450 --> 22:33.000 It's hard to find a job in advocacy 22:33.000 --> 22:35.220 and then at the end of the day when you're done working 22:35.220 --> 22:37.490 and then you have to do advocacy, 22:37.490 --> 22:39.390 it's hard to just have so much energy. 22:40.666 --> 22:42.570 So advocacy is hard 22:42.570 --> 22:44.490 because it's hard to find a job 22:44.490 --> 22:47.670 and then if you don't find the job, then it's hard 22:47.670 --> 22:51.570 to do it recreationally because it takes a lot outta you. 22:51.570 --> 22:53.610 It definitely is. And that's one 22:53.610 --> 22:57.347 of the reasons why the advocacy sphere seems 22:57.347 --> 23:01.710 to be taken over by, you know, privileged people. 23:01.710 --> 23:03.870 And we're not hearing so many different voices 23:03.870 --> 23:06.480 because so many of us aren't able to 23:06.480 --> 23:08.700 do this advocacy work without being paid. 23:08.700 --> 23:11.640 And so it just takes a second seat 23:11.640 --> 23:15.102 and so many voices are unable to be heard through that, 23:15.102 --> 23:17.613 which is definitely a challenge for our community. 23:19.500 --> 23:22.590 So the question we always end on is 23:22.590 --> 23:25.320 through your darkest days and your toughest hours, 23:25.320 --> 23:26.700 what gives you the courage just 23:26.700 --> 23:28.143 to get through one more day? 23:29.360 --> 23:33.390 I think just helping others, advancing 23:33.390 --> 23:36.723 where we are in disability really gets me through the day, 23:39.060 --> 23:41.550 learning more and learning the lived 23:41.550 --> 23:43.440 experiences of other people. 23:43.440 --> 23:44.790 That's been one of the main, 23:44.790 --> 23:47.190 my main goals since I graduated college was 23:47.190 --> 23:49.140 to learn more about what's out there, 23:49.140 --> 23:52.890 'cause I deal with something that is very, 23:52.890 --> 23:56.460 very minute in the world of disability 23:56.460 --> 23:58.350 and there's so much more for me to learn. 23:58.350 --> 24:01.200 So that's been what I've been trying to do. 24:01.200 --> 24:03.570 That's so exciting. Do you have any tips on how to do 24:03.570 --> 24:06.355 that if someone else wants to get involved? 24:06.355 --> 24:09.150 Just, getting out there as much as possible. 24:09.150 --> 24:12.330 Going on LinkedIn, networking a lot, seeing, 24:12.330 --> 24:14.163 reading everything that you can. 24:14.163 --> 24:16.590 I don't obviously read everything I can just 24:16.590 --> 24:20.310 because I don't, but there's a lot out there. 24:20.310 --> 24:25.310 People write a lot, read those. Yeah. A lot of stuff to do. 24:25.530 --> 24:28.590 That's great. Do you have any other final messages 24:28.590 --> 24:31.549 to get out to the invisible disability community? 24:31.549 --> 24:34.616 Just, keep fighting. 24:34.616 --> 24:36.730 There's a war to be won 24:37.950 --> 24:39.213 and it's not a war, 24:40.430 --> 24:42.330 it's a battle that a lot of people, that a lot 24:42.330 --> 24:45.723 of people in high places want to be won. 24:46.800 --> 24:51.698 So. Yeah. And don't be afraid of advocacy. 24:51.698 --> 24:56.472 I know it's daunting looking space, 24:56.472 --> 25:00.480 but legislators, especially those on the state level, 25:00.480 --> 25:02.250 they really wanna hear from you. 25:02.250 --> 25:05.580 Definitely. And also, even if you don't wanna get involved 25:05.580 --> 25:08.820 with the legislator, advocacy is just sharing your story. 25:08.820 --> 25:10.080 Every time you share your story, 25:10.080 --> 25:12.180 you help tear down some of the stigma. 25:12.180 --> 25:14.440 And it can be incredibly powerful. 25:14.440 --> 25:15.273 Yeah. 25:15.273 --> 25:16.350 Yeah, we just need to talk more 25:16.350 --> 25:18.990 and try to educate as many people in our lives 25:18.990 --> 25:20.703 and as possible. 25:22.020 --> 25:23.790 Jake, thanks so much for coming on today. 25:23.790 --> 25:25.020 This has been very fun 25:25.020 --> 25:27.570 and I'm very excited to learn so much about you. 25:27.570 --> 25:29.160 Thank you for having me.