1 00:00:05,160 --> 00:00:07,840 Speaker 1: Hey, this is Annie and Samantha. I'm welcome to Stephane 2 00:00:07,880 --> 00:00:19,160 Speaker 1: never told your production of I Heart Radio, and welcome 3 00:00:19,200 --> 00:00:22,360 Speaker 1: to activists around the world. Yeah, I've changed it again. 4 00:00:22,480 --> 00:00:24,000 Speaker 1: This is what we're gonna keep doing. We'ch is gonna 5 00:00:24,079 --> 00:00:29,280 Speaker 1: make it so. We are celebrating people who have or 6 00:00:29,400 --> 00:00:34,280 Speaker 1: continue to do things that impact their community, our community, 7 00:00:34,440 --> 00:00:37,959 Speaker 1: and therefore the world. And today we're celebrating the beautiful 8 00:00:38,000 --> 00:00:42,320 Speaker 1: works of disability activists. Shooti Lata Sing and Sing is 9 00:00:42,360 --> 00:00:45,040 Speaker 1: a deaf blind activist who is making history in India 10 00:00:45,040 --> 00:00:47,000 Speaker 1: and around the world. In just in case you don't know, 11 00:00:47,120 --> 00:00:50,120 Speaker 1: deaf blindness is quote a rare condition in which an 12 00:00:50,120 --> 00:00:53,880 Speaker 1: individual has combined hearing and vision loss, thus limiting access 13 00:00:53,920 --> 00:00:57,080 Speaker 1: to both auditory and visual information. And this is according 14 00:00:57,080 --> 00:01:00,360 Speaker 1: to the National Center of Deaf Blindness and specifically for seeing. 15 00:01:00,800 --> 00:01:04,680 Speaker 1: Hers is a progressive death blindness, which means she loses 16 00:01:04,680 --> 00:01:07,440 Speaker 1: her sight and hearing bit by dip bit through her lifetime. 17 00:01:07,520 --> 00:01:09,720 Speaker 1: So it has gotten progressively the wars and it is 18 00:01:09,720 --> 00:01:12,360 Speaker 1: getting progressively wars. But she is actively able to still 19 00:01:12,400 --> 00:01:15,760 Speaker 1: communicate and still see sign language um and so she 20 00:01:15,800 --> 00:01:18,280 Speaker 1: has some accessibility, but it is getting more and more 21 00:01:18,319 --> 00:01:21,720 Speaker 1: difficult for sure. Yes, And when it comes to education opportunities, 22 00:01:21,920 --> 00:01:25,400 Speaker 1: the Center reports educational resources and accommodation are more difficult 23 00:01:25,400 --> 00:01:28,440 Speaker 1: to access due to the multiple diagnoses and due to 24 00:01:28,480 --> 00:01:30,120 Speaker 1: the systems that are not set up to provide the 25 00:01:30,160 --> 00:01:34,199 Speaker 1: full services that they deserve in the educational systems um quote. 26 00:01:34,400 --> 00:01:38,120 Speaker 1: Because death blindness significantly impacts a child our use ability 27 00:01:38,160 --> 00:01:41,520 Speaker 1: to access information, communicate, and interact with other people, it 28 00:01:41,600 --> 00:01:46,120 Speaker 1: has profound implications for educational services. The limited sensory channels 29 00:01:46,160 --> 00:01:50,000 Speaker 1: available for learning necessitate developing a highly individualized program for 30 00:01:50,040 --> 00:01:53,279 Speaker 1: each child that addresses their interests and unique ways of learning. 31 00:01:53,640 --> 00:01:58,600 Speaker 1: Sensory deficits can easily mislead even experienced educators into underestimating 32 00:01:58,640 --> 00:02:04,320 Speaker 1: are occasionally overestimate eating intelligence and constructing inappropriate programs. Assessment 33 00:02:04,440 --> 00:02:07,160 Speaker 1: is crucial every step of the way, right. And I 34 00:02:07,200 --> 00:02:09,720 Speaker 1: know we've talked about the system, especially when it comes 35 00:02:09,720 --> 00:02:15,000 Speaker 1: to individualized education plans UM and active helping for those 36 00:02:15,040 --> 00:02:17,120 Speaker 1: who are in the disabled community who may need a 37 00:02:17,120 --> 00:02:20,120 Speaker 1: little more assistance. Uh. And it's hard to get and 38 00:02:20,360 --> 00:02:23,120 Speaker 1: a lot of the times there's no funding in the schools. Uh. 39 00:02:23,200 --> 00:02:25,400 Speaker 1: If you really want something to be done, it's probably 40 00:02:25,480 --> 00:02:28,680 Speaker 1: privately funded, and I think that needs to be said. Overall, 41 00:02:28,800 --> 00:02:32,760 Speaker 1: this is a worldwide problem. The United States is probably 42 00:02:33,240 --> 00:02:36,000 Speaker 1: I haven't looked at the statistics, not that great when 43 00:02:36,000 --> 00:02:40,080 Speaker 1: it comes to working with children with special needs um And. 44 00:02:40,120 --> 00:02:43,280 Speaker 1: I say this as in like school level and UM 45 00:02:43,320 --> 00:02:45,919 Speaker 1: I have seen the testing system in order to get 46 00:02:45,919 --> 00:02:49,200 Speaker 1: any type of assistance for that, and it's difficult, and 47 00:02:49,240 --> 00:02:50,760 Speaker 1: if you don't know what you're doing, you can be 48 00:02:50,800 --> 00:02:54,200 Speaker 1: relroaded by the system that does minimal to keep kids 49 00:02:54,240 --> 00:02:56,720 Speaker 1: out of the way instead of actually educating them. So 50 00:02:57,520 --> 00:02:59,840 Speaker 1: this is a worldwide and we wouldn't make sure we 51 00:02:59,880 --> 00:03:01,800 Speaker 1: had dressed this even though what we who we're talking 52 00:03:01,800 --> 00:03:07,040 Speaker 1: about is based in India. Unfortunately, these experiences are again international. 53 00:03:07,760 --> 00:03:11,280 Speaker 1: But for Seeing, being born girl was an added difficulty 54 00:03:11,320 --> 00:03:14,280 Speaker 1: for her to access her independence. Seeing it recalled her 55 00:03:14,280 --> 00:03:16,800 Speaker 1: own experiences of being isolated in her home, and she 56 00:03:16,880 --> 00:03:19,079 Speaker 1: spoke about her fears of being out in the world 57 00:03:19,320 --> 00:03:21,520 Speaker 1: as she and many of the women didn't feel safe 58 00:03:21,600 --> 00:03:23,720 Speaker 1: due to the violence against women in her area. And 59 00:03:23,760 --> 00:03:27,040 Speaker 1: oftentimes we're limited to just getting married and then stayed 60 00:03:27,080 --> 00:03:29,839 Speaker 1: at home and that was their future. Um And. Though 61 00:03:29,840 --> 00:03:32,919 Speaker 1: her brother who also was diagnosed with deaf blindness. He's 62 00:03:32,919 --> 00:03:35,600 Speaker 1: been able to have more opportunities to do more, such 63 00:03:35,640 --> 00:03:38,680 Speaker 1: as independently traveling and just being able to communicate freely 64 00:03:38,840 --> 00:03:42,240 Speaker 1: because it was a little less taboo for people to 65 00:03:42,240 --> 00:03:46,120 Speaker 1: be closer, standing closer, being able to access touch people 66 00:03:46,280 --> 00:03:48,040 Speaker 1: kind of if you know what I mean, Like women 67 00:03:48,080 --> 00:03:51,480 Speaker 1: are definitely all about you need to uh stay a 68 00:03:51,520 --> 00:03:54,000 Speaker 1: certain distance and this is how she explained that you 69 00:03:54,040 --> 00:03:56,600 Speaker 1: need to say a certain distance away and therefore this 70 00:03:56,760 --> 00:04:00,000 Speaker 1: level of respect that really limited her ability to see 71 00:04:00,360 --> 00:04:02,640 Speaker 1: and talk to people and meaning that she needed to 72 00:04:02,640 --> 00:04:05,120 Speaker 1: be in close proximity. One of the pictures shows her 73 00:04:05,160 --> 00:04:07,560 Speaker 1: with her interpreter and very close because that's how she 74 00:04:07,640 --> 00:04:12,000 Speaker 1: sees UM. So if you need that type of interaction 75 00:04:12,160 --> 00:04:14,960 Speaker 1: and you're not allowed to do that because of social taboos, 76 00:04:15,000 --> 00:04:17,520 Speaker 1: that definitely limits who you're able to talk to and 77 00:04:17,560 --> 00:04:20,479 Speaker 1: what you're able to do. UM. But she was able 78 00:04:20,520 --> 00:04:22,960 Speaker 1: to finish and complete schooling with some help from her 79 00:04:22,960 --> 00:04:26,240 Speaker 1: family who are educated and was able to assist her. 80 00:04:26,279 --> 00:04:29,480 Speaker 1: But she was doing this without the school's assistance or support. 81 00:04:29,600 --> 00:04:32,080 Speaker 1: So that says a lot and we know that can 82 00:04:32,160 --> 00:04:35,640 Speaker 1: make a break a lot of students and her educational 83 00:04:35,680 --> 00:04:38,480 Speaker 1: experience again was not a positive one, with her teachers 84 00:04:38,560 --> 00:04:41,520 Speaker 1: unable or unwilling to meet her knees. She left Filly 85 00:04:41,560 --> 00:04:44,680 Speaker 1: discouraged and depressed, but she persevered and was able to 86 00:04:44,720 --> 00:04:48,520 Speaker 1: continue her studies at the Indira Gandhi National Open University, 87 00:04:49,000 --> 00:04:52,240 Speaker 1: graduating with a BA in Biology UM. But it was 88 00:04:52,279 --> 00:04:54,720 Speaker 1: still challenging task to do as she had to do 89 00:04:54,880 --> 00:04:58,960 Speaker 1: most things by self teaching right UM. But she didn't 90 00:04:59,000 --> 00:05:01,640 Speaker 1: stop there. She can need on in her education, eventually 91 00:05:01,680 --> 00:05:04,400 Speaker 1: becoming the first person in India to qualify as a 92 00:05:04,440 --> 00:05:08,160 Speaker 1: physiotherapist or physical therapist. And she has been an advocate 93 00:05:08,200 --> 00:05:11,520 Speaker 1: for others in the deafblind community too. UM. She has 94 00:05:11,560 --> 00:05:14,280 Speaker 1: taken her own experiences within her community to have a 95 00:05:14,320 --> 00:05:17,919 Speaker 1: larger conversation UM for the rights and fair opportunities for 96 00:05:18,000 --> 00:05:22,080 Speaker 1: all women with death blindness, she said in an interview 97 00:05:22,160 --> 00:05:24,880 Speaker 1: about her work with Since International, which is the quote 98 00:05:25,120 --> 00:05:29,320 Speaker 1: only national level organization supporting needs based services which enables 99 00:05:29,480 --> 00:05:32,279 Speaker 1: children and adults with death blindness to overcome the challenges 100 00:05:32,360 --> 00:05:34,839 Speaker 1: caused due to deaf blindness UM and that's according to 101 00:05:34,839 --> 00:05:37,599 Speaker 1: their site. But in the interview she said, my vision 102 00:05:37,720 --> 00:05:40,120 Speaker 1: is a world where deafbline people will be courageous enough 103 00:05:40,160 --> 00:05:42,479 Speaker 1: to challenge others. I want a world where women with 104 00:05:42,520 --> 00:05:45,279 Speaker 1: deaf blindness can go out without any fear in a 105 00:05:45,320 --> 00:05:48,720 Speaker 1: country like ours. I want a world that is fully accessible, inclusive, 106 00:05:48,760 --> 00:05:51,320 Speaker 1: and encouraging. I want to make everyone aware that there 107 00:05:51,400 --> 00:05:53,720 Speaker 1: is a condition called deaf blindness and it can limit 108 00:05:53,760 --> 00:05:57,279 Speaker 1: a person's performance considerably. Right, And she's been a vocal 109 00:05:57,320 --> 00:06:01,200 Speaker 1: about limited access to better education due to mislabeling of 110 00:06:01,240 --> 00:06:04,200 Speaker 1: those with disabilities like a death blindness, talking about how 111 00:06:04,200 --> 00:06:07,040 Speaker 1: she was frustrated during school and would act out due 112 00:06:07,040 --> 00:06:09,880 Speaker 1: to that and was labels as such or even labeled 113 00:06:09,880 --> 00:06:12,960 Speaker 1: as quote dull uh and the impact of such a 114 00:06:13,040 --> 00:06:16,680 Speaker 1: negative influence, she continued in her interview, quote low self 115 00:06:16,760 --> 00:06:20,159 Speaker 1: esteem among persons with disabilities is common, and this is 116 00:06:20,320 --> 00:06:23,839 Speaker 1: largely because of the negativity of society. I want to 117 00:06:23,920 --> 00:06:26,359 Speaker 1: change this. I do not want deaf blind youth to 118 00:06:26,440 --> 00:06:29,760 Speaker 1: remain dependent on others for employment. Instead, they all should 119 00:06:29,760 --> 00:06:31,960 Speaker 1: have something of their own for which they need guidance, 120 00:06:32,160 --> 00:06:34,240 Speaker 1: and I hope to be able to provide this guidance. 121 00:06:34,560 --> 00:06:36,400 Speaker 1: They should be aware of their rights and how to 122 00:06:36,600 --> 00:06:39,600 Speaker 1: use it. And within the issues of education, she's become 123 00:06:39,640 --> 00:06:43,560 Speaker 1: a fish advocate and fostering supports groups for the younger generation. 124 00:06:43,760 --> 00:06:47,279 Speaker 1: In our conversations about her work with SINCE International India, 125 00:06:47,440 --> 00:06:50,080 Speaker 1: she states, many people with deaf blindness are not so 126 00:06:50,200 --> 00:06:53,839 Speaker 1: fortunate to receive support, whether emotional or financial. So what 127 00:06:53,920 --> 00:06:56,080 Speaker 1: we ask from our government bodies is to build an 128 00:06:56,160 --> 00:06:59,840 Speaker 1: ecosystem of support that fosters and nurtures our skills and 129 00:07:00,240 --> 00:07:04,200 Speaker 1: with that um she has emphasized the importance of accessing tech. 130 00:07:04,480 --> 00:07:06,920 Speaker 1: In an interview with the Norwegian Human Rights Fund, she 131 00:07:07,040 --> 00:07:09,720 Speaker 1: stressed the need for tech companies to be inclusive for 132 00:07:09,760 --> 00:07:12,160 Speaker 1: people in the disabled community, as it can be a 133 00:07:12,160 --> 00:07:15,400 Speaker 1: way to open up doors for communication and independence for 134 00:07:15,600 --> 00:07:18,720 Speaker 1: so many. She said in her interview, technology is the 135 00:07:18,800 --> 00:07:22,600 Speaker 1: key and accessibility is not a checkbox. It must be mainstreamed. 136 00:07:22,720 --> 00:07:25,440 Speaker 1: When tech companies introduce new products, they need to consider 137 00:07:25,520 --> 00:07:28,880 Speaker 1: us no matter what. Having a phone that magnifies text 138 00:07:28,920 --> 00:07:31,120 Speaker 1: now means I can order a cab, pay for things 139 00:07:31,120 --> 00:07:34,600 Speaker 1: in shops, send voice messages, use Google transferab and go 140 00:07:34,680 --> 00:07:37,160 Speaker 1: out into the world and flourish. And she has worked 141 00:07:37,160 --> 00:07:40,280 Speaker 1: closely with SINCE International, has both an advocacy officer with 142 00:07:40,320 --> 00:07:43,440 Speaker 1: SINCE International India and public speaker as an advocate for 143 00:07:43,480 --> 00:07:46,520 Speaker 1: those with death blindness. She participated at their roundtable in 144 00:07:46,800 --> 00:07:50,320 Speaker 1: c OSP the Conference of State Parties and in the 145 00:07:50,320 --> 00:07:52,840 Speaker 1: thirteenth session of the Convention on the Rights of Persons 146 00:07:52,880 --> 00:07:55,960 Speaker 1: with Disabilities are crp D at the United Nations and 147 00:07:56,000 --> 00:07:59,920 Speaker 1: has recently joined the Executive Committee as a Regional Representative 148 00:08:00,040 --> 00:08:02,880 Speaker 1: from India with the Commonwealth Network of Children and Youth 149 00:08:02,920 --> 00:08:06,480 Speaker 1: with Disabilities to work globally for the well being of 150 00:08:06,560 --> 00:08:10,760 Speaker 1: disabled children and youth during this pandemic. Right she has 151 00:08:10,800 --> 00:08:13,400 Speaker 1: done a lot, she continues to do a lot. She's 152 00:08:13,440 --> 00:08:17,480 Speaker 1: actually mentored several activists as well, including one young lady 153 00:08:17,640 --> 00:08:21,680 Speaker 1: who wanna essay contest with the UN and about how 154 00:08:21,800 --> 00:08:24,800 Speaker 1: deaf blindness has affected her, but how she is continuing 155 00:08:24,840 --> 00:08:27,640 Speaker 1: on who has become a big voice, especially for the 156 00:08:27,680 --> 00:08:31,120 Speaker 1: youth of the deaf blind community. And that's something that 157 00:08:31,160 --> 00:08:34,440 Speaker 1: she obviously really really values, is just being able to 158 00:08:34,679 --> 00:08:38,800 Speaker 1: mentor and push younger activists and younger people in this 159 00:08:38,880 --> 00:08:42,120 Speaker 1: disabled community to advocate for themselves and to be able 160 00:08:42,120 --> 00:08:44,320 Speaker 1: to be heard. Yes, but we love to see I 161 00:08:44,360 --> 00:08:49,240 Speaker 1: love it and see these threads of mentoring and activists 162 00:08:49,240 --> 00:08:51,760 Speaker 1: being inspired by other activists. And sometimes we'll talk about 163 00:08:51,760 --> 00:08:54,320 Speaker 1: somebody in one of these and then a couple episodes later. Well, yeah, 164 00:08:54,440 --> 00:08:56,760 Speaker 1: so we'll talk about someone else who was inspired by 165 00:08:56,760 --> 00:08:58,400 Speaker 1: the first we just talked about. That's so cool. I 166 00:08:58,440 --> 00:09:01,920 Speaker 1: love that, which I love. Yes us well as always, 167 00:09:02,520 --> 00:09:04,880 Speaker 1: if you have suggestions for people we should shout out 168 00:09:04,880 --> 00:09:09,280 Speaker 1: in this segment, whatever it is, whatever we call it, uh, 169 00:09:09,400 --> 00:09:11,240 Speaker 1: please let us know. You can email U at stuff 170 00:09:11,240 --> 00:09:13,000 Speaker 1: at your mom Stuff at i heeart media dot com. 171 00:09:13,240 --> 00:09:15,000 Speaker 1: You find us on Twitter at mom Stuff podcast or 172 00:09:15,080 --> 00:09:17,199 Speaker 1: Instagram and Stuff I Never Told You. Thanks as always 173 00:09:17,240 --> 00:09:20,320 Speaker 1: to our super producer Christina. Thank you Christina, and thanks 174 00:09:20,320 --> 00:09:22,240 Speaker 1: to you for listening Stuff I Never Told You. Use 175 00:09:22,280 --> 00:09:24,720 Speaker 1: protection of iHeart Radio for more podcast my heart Radio 176 00:09:24,720 --> 00:09:27,040 Speaker 1: if you can visit the iHeart Radio app, Apple podcast 177 00:09:27,160 --> 00:09:28,640 Speaker 1: or where you listen to your favorite shows.