1 00:00:06,673 --> 00:00:08,407 When I turned 17, 2 00:00:08,407 --> 00:00:12,358 I went to the doctor because things weren't developing normally. 3 00:00:12,358 --> 00:00:16,567 I still hadn't started my period. I still didn't have boobs. 4 00:00:16,567 --> 00:00:18,636 I was referred up the chain of specialists, 5 00:00:18,636 --> 00:00:21,577 and we set out to find what was wrong with me. 6 00:00:21,577 --> 00:00:24,177 This was the first time, in a medical setting, 7 00:00:24,177 --> 00:00:27,415 that I felt like a thing to be fixed. 8 00:00:29,468 --> 00:00:35,030 The doctors ordered some tests, and when they got the results back, 9 00:00:35,030 --> 00:00:38,882 they said, "Well, we didn't expect that!", 10 00:00:39,532 --> 00:00:41,852 which I think is very next to "oops" 11 00:00:41,852 --> 00:00:45,734 on the list of things you don't want to hear in the doctor's office. 12 00:00:45,734 --> 00:00:47,731 (Laughter) 13 00:00:47,731 --> 00:00:50,263 A quick biology refresher for you: 14 00:00:50,263 --> 00:00:55,632 women have two X chromosomes and men have an X and a Y, right? 15 00:00:55,632 --> 00:00:58,059 Well, usually. 16 00:00:58,683 --> 00:01:02,165 The doctors were confused because, when my chromosome analysis came back, 17 00:01:02,165 --> 00:01:04,503 I had an X and a Y, 18 00:01:04,503 --> 00:01:07,496 which is typically associated with being male. 19 00:01:08,033 --> 00:01:12,648 I was intersex, somewhere between the sexes. 20 00:01:14,134 --> 00:01:18,005 Intersex people have some combination of both male and female, 21 00:01:18,005 --> 00:01:23,669 whether that's in their external anatomy, their internal reproductive organs, 22 00:01:24,309 --> 00:01:27,275 their hormone levels, or their DNA. 23 00:01:27,765 --> 00:01:29,497 Intersex also includes people 24 00:01:29,497 --> 00:01:34,022 who don't have any particular aspect of the opposite sex, 25 00:01:34,022 --> 00:01:39,348 but their anatomy just isn't quite typical for what you would expect. 26 00:01:39,348 --> 00:01:42,945 Being intersex is not the same as being transgender. 27 00:01:42,945 --> 00:01:48,758 Transgender people typically have bodies that correspond entirely to one sex. 28 00:01:48,758 --> 00:01:52,547 While it is possible to be both intersex and transgender, 29 00:01:52,547 --> 00:01:56,014 the majority of each group is either one or the other. 30 00:01:56,466 --> 00:01:59,419 People find out that they're intersex in a few ways. 31 00:02:00,489 --> 00:02:01,919 Some people find out - 32 00:02:01,919 --> 00:02:05,078 well, their parents and their doctors find out when they're babies, 33 00:02:05,078 --> 00:02:08,718 and they notice that their anatomy just isn't quite typical. 34 00:02:08,718 --> 00:02:10,548 Other people find out during puberty, 35 00:02:10,548 --> 00:02:13,310 when puberty goes in ways that they didn't expect, 36 00:02:13,310 --> 00:02:17,093 or, as in my case, when puberty just doesn't happen at all. 37 00:02:17,093 --> 00:02:21,609 So, once we knew "what was wrong with me," 38 00:02:21,609 --> 00:02:24,609 it became a thing to be fixed. 39 00:02:24,609 --> 00:02:26,570 We had our game plan. 40 00:02:26,570 --> 00:02:30,581 I had streak gonads, tiny little streaks of tissue 41 00:02:30,581 --> 00:02:33,409 that would normally have developed into ovaries in women 42 00:02:33,409 --> 00:02:37,849 or testes in men, but in me, never developed into anything. 43 00:02:37,849 --> 00:02:40,200 Those might be cancerous, 44 00:02:40,200 --> 00:02:44,172 so I would have to have surgery to remove them. 45 00:02:45,051 --> 00:02:47,811 If they were cancerous and the cancer had spread, 46 00:02:47,811 --> 00:02:51,365 then I might need more surgery, and maybe chemo, 47 00:02:51,365 --> 00:02:53,471 and maybe an oncology team. 48 00:02:53,851 --> 00:02:57,204 During surgery, we would also evaluate what female anatomy I had 49 00:02:57,204 --> 00:02:59,178 and whether it was all hooked up. 50 00:02:59,178 --> 00:03:03,053 If I had a uterus, we needed to know that it wasn't often its own little world, 51 00:03:03,053 --> 00:03:06,623 because hormone replacement therapy could stimulate a period 52 00:03:06,623 --> 00:03:09,140 and the blood would have nowhere to go. 53 00:03:09,140 --> 00:03:13,053 At the end of the day, a few prognoses were tossed out. 54 00:03:13,053 --> 00:03:15,042 I would probably never be pregnant. 55 00:03:15,042 --> 00:03:17,363 I might never have a normal sex life. 56 00:03:17,363 --> 00:03:19,870 And by the time all of the diagnostics were done, 57 00:03:19,870 --> 00:03:21,742 I would be 18. 58 00:03:21,742 --> 00:03:25,224 Now, I know that starting puberty was really high 59 00:03:25,224 --> 00:03:28,213 on everyone's list of things to do when they turned 18 - 60 00:03:28,213 --> 00:03:30,447 (Laughter) 61 00:03:31,577 --> 00:03:35,165 but I'm happy to report that everything turned out well, 62 00:03:35,165 --> 00:03:38,615 including my moderately awkward freshman year of college. 63 00:03:38,615 --> 00:03:40,146 (Laughter) 64 00:03:40,146 --> 00:03:41,771 I didn't have cancer, 65 00:03:41,771 --> 00:03:44,880 I can probably be pregnant with the help of an egg donor, 66 00:03:44,880 --> 00:03:47,994 and my sex life is none of your business. 67 00:03:47,994 --> 00:03:50,178 (Laughter) 68 00:03:50,178 --> 00:03:53,104 (Cheers) (Applause) 69 00:03:56,355 --> 00:03:59,819 Our game plan had gone perfectly. 70 00:04:00,279 --> 00:04:04,175 According to any medical standard, I was fixed, 71 00:04:04,755 --> 00:04:08,266 but fixing is different than healing, 72 00:04:08,687 --> 00:04:11,812 and healing rarely comes with a road map. 73 00:04:12,956 --> 00:04:15,875 I think it's indicative of a fixing mentality 74 00:04:15,875 --> 00:04:19,397 that I was never referred to counseling, 75 00:04:19,397 --> 00:04:22,047 I was never referred to group counseling, 76 00:04:22,047 --> 00:04:25,977 and it was never suggested that I could meet people like me. 77 00:04:27,137 --> 00:04:31,348 Imagine being told at 17 that you have red hair. 78 00:04:31,348 --> 00:04:35,678 And you're like, "Red hair... what's that?" 79 00:04:36,198 --> 00:04:38,839 That sounds ridiculous, 80 00:04:38,839 --> 00:04:42,180 but at 1% to 2% of the population worldwide, 81 00:04:42,180 --> 00:04:45,789 being intersex is about as common as having red hair. 82 00:04:46,347 --> 00:04:50,022 In the United States, it's also about as common as being Jewish. 83 00:04:51,149 --> 00:04:53,589 So, where are we? 84 00:04:53,589 --> 00:04:58,570 And how have so many people never heard of us? 85 00:04:58,570 --> 00:05:03,720 It still astonishes me that, in several years of being out as an intersex person, 86 00:05:03,720 --> 00:05:10,630 I have never met another intersex person naturally, on the street, in the wild - 87 00:05:10,630 --> 00:05:12,935 (Laughter) 88 00:05:13,921 --> 00:05:17,202 Even in the LGBT community, nobody's ever said, 89 00:05:17,202 --> 00:05:21,324 "Oh, yeah, me too!", or "My sister is," "My friend is." 90 00:05:21,960 --> 00:05:25,252 In our personal, professional and public lives, 91 00:05:25,252 --> 00:05:27,974 we are deep underground. 92 00:05:27,974 --> 00:05:31,282 We've been ashamed of it, so we don't talk about it. 93 00:05:31,282 --> 00:05:35,085 So, we become ashamed of it, and the cycle continues. 94 00:05:36,132 --> 00:05:39,182 But we can't be invisible anymore. 95 00:05:39,732 --> 00:05:43,830 We need to be seen and we need you to know that we exist 96 00:05:43,830 --> 00:05:46,990 because, otherwise, the next generation of intersex kids 97 00:05:46,990 --> 00:05:50,883 is going to grow up just as confused and ashamed as we did. 98 00:05:51,355 --> 00:05:52,842 We need people to know 99 00:05:52,842 --> 00:05:57,124 that, if intersex people are 1% of every population, 100 00:05:57,124 --> 00:06:01,685 then there may be five intersex Fortune 500 CEOs, 101 00:06:01,685 --> 00:06:04,779 there may be five intersex members of Congress, 102 00:06:04,779 --> 00:06:09,516 there may be three intersex United States astronauts, 103 00:06:09,516 --> 00:06:14,845 and there may be four intersex kids in the average US elementary school. 104 00:06:15,335 --> 00:06:18,346 We need to be seen and we need everyone's voices 105 00:06:18,346 --> 00:06:23,026 because the consequences of us not being seen are dire. 106 00:06:23,806 --> 00:06:26,475 Across the United States and around the world, 107 00:06:26,475 --> 00:06:32,106 intersex babies have been subjected to what's been called genital mutilation. 108 00:06:32,956 --> 00:06:37,086 I worry that that term stigmatizes intersex people, 109 00:06:37,086 --> 00:06:40,666 but I do think it can base the gravity of the situation. 110 00:06:41,707 --> 00:06:45,696 Intersex babies are being subjected to surgery that is cosmetic 111 00:06:45,696 --> 00:06:47,348 and medically not necessary, 112 00:06:47,348 --> 00:06:50,857 and is designed to make their genitals appear more normal. 113 00:06:51,477 --> 00:06:54,378 These surgeries carry risks of scarring, 114 00:06:54,378 --> 00:06:58,326 loss of sensation, and sexual difficulties later on. 115 00:06:59,899 --> 00:07:03,402 What's really surprising is that relatively minor abnormalities 116 00:07:03,402 --> 00:07:05,939 can bring infants under the knife. 117 00:07:06,729 --> 00:07:08,865 In a condition called hypospadias, 118 00:07:08,865 --> 00:07:12,629 a boy's penis has an under opening, instead of a tip opening. 119 00:07:12,629 --> 00:07:15,081 The term comes from the Greek "hypo" for "under," 120 00:07:15,081 --> 00:07:17,461 and "spadia" for "opening." 121 00:07:18,369 --> 00:07:19,807 Instead of being at the tip, 122 00:07:19,807 --> 00:07:22,250 the urethra is on the underside of the penis, 123 00:07:22,250 --> 00:07:24,064 somewhere lower down. 124 00:07:24,570 --> 00:07:26,720 These boys generally have a functioning penis, 125 00:07:26,720 --> 00:07:29,548 so why are they being subjected to surgery? 126 00:07:29,548 --> 00:07:35,417 Well, so that, when they are older, they can stand while peeing; 127 00:07:35,929 --> 00:07:37,901 so that their penis doesn't look weird. 128 00:07:37,901 --> 00:07:41,551 Imagine a set of parents seeing their new baby and saying, 129 00:07:41,551 --> 00:07:43,931 "Those ears have got to go." 130 00:07:44,873 --> 00:07:48,563 The doctors would look at them like they were nuts, 131 00:07:48,563 --> 00:07:51,722 but, for some reason, when the abnormality is in a baby's genitals, 132 00:07:51,722 --> 00:07:54,333 surgery seems like the only option. 133 00:07:55,292 --> 00:08:00,273 Hypospadias affects 1 in 200 boys, which makes it relatively common. 134 00:08:00,273 --> 00:08:04,313 Even so, we don't have good data on the number of procedures performed. 135 00:08:04,313 --> 00:08:05,852 We also don't have good data 136 00:08:05,852 --> 00:08:09,004 on the success or failure rates of these surgeries. 137 00:08:09,004 --> 00:08:14,116 Failure rates seem to range between 4% and 67%, 138 00:08:14,116 --> 00:08:17,125 depending on the type of procedure performed 139 00:08:17,125 --> 00:08:19,868 and the type of surgeon performing the surgery. 140 00:08:20,404 --> 00:08:22,575 That's a huge range. 141 00:08:23,245 --> 00:08:28,394 I would argue that any risk is too great when the procedure is purely cosmetic 142 00:08:28,394 --> 00:08:32,295 and the child is too young to participate in the decision-making, 143 00:08:32,295 --> 00:08:35,575 especially because failure means more surgery. 144 00:08:35,575 --> 00:08:39,045 Kids have ended up having 10, 20, 25 surgeries 145 00:08:39,045 --> 00:08:41,107 to correct what went wrong in the first one 146 00:08:41,107 --> 00:08:43,441 and in subsequent surgeries. 147 00:08:44,856 --> 00:08:48,348 They've ended up spending spring break and summer at home, recuperating, 148 00:08:48,348 --> 00:08:50,793 instead of having fun with their friends. 149 00:08:51,506 --> 00:08:53,357 And for what? 150 00:08:54,626 --> 00:08:57,877 I honestly believe that parents and physicians 151 00:08:57,877 --> 00:09:00,778 want to to do right by these kids. 152 00:09:00,778 --> 00:09:05,146 It's impossible to know the particulars of every case, 153 00:09:05,146 --> 00:09:08,459 but I do know the physics of judgement. 154 00:09:08,459 --> 00:09:12,796 I know that, when we're treating other people as things to be fixed, 155 00:09:12,796 --> 00:09:15,918 we're probably treating ourselves the same way. 156 00:09:15,918 --> 00:09:17,887 When we think that we're not good enough, 157 00:09:17,887 --> 00:09:20,078 we think that other people aren't good enough, 158 00:09:20,078 --> 00:09:22,140 and then we start thinking that other people 159 00:09:22,140 --> 00:09:24,168 see other people as not good enough. 160 00:09:24,168 --> 00:09:30,549 And that spirals into worries of people seeing this child as not good enough, 161 00:09:30,549 --> 00:09:33,779 wondering if this kid will be teased, 162 00:09:33,779 --> 00:09:37,528 wondering what will happen a baby-sitter changes their diaper, 163 00:09:38,628 --> 00:09:41,728 wondering what will happen when a colleague notices 164 00:09:41,728 --> 00:09:43,358 that this man pees sitting down 165 00:09:43,358 --> 00:09:46,389 or when a partner sees this woman's slightly enlarged clitoris 166 00:09:46,389 --> 00:09:48,058 for the first time. 167 00:09:48,946 --> 00:09:51,550 These fears are real, 168 00:09:51,550 --> 00:09:54,700 and I have faced similar ones in my own life, 169 00:09:55,661 --> 00:09:58,060 but we are miracles, 170 00:09:58,060 --> 00:10:00,560 made up of particles smaller than we can conceive of, 171 00:10:00,560 --> 00:10:03,206 from stars larger than we can possibly imagine, 172 00:10:03,206 --> 00:10:05,571 and we don't have to get caught up 173 00:10:05,571 --> 00:10:08,178 in the in-between spaces of inches and pounds. 174 00:10:08,178 --> 00:10:11,582 We can remember that all of us, male, female, intersex, 175 00:10:11,582 --> 00:10:13,451 are not things to be fixed. 176 00:10:13,451 --> 00:10:15,620 We are people to be loved. 177 00:10:16,253 --> 00:10:19,263 And if you believe that you're a person to be loved 178 00:10:19,263 --> 00:10:21,494 and treat yourself with kindness and patience, 179 00:10:21,494 --> 00:10:23,903 then you'll treat other people the same way. 180 00:10:23,903 --> 00:10:26,284 And that's what intersex people really need, 181 00:10:26,284 --> 00:10:30,016 because decisions about our bodies are being made by people like you. 182 00:10:30,016 --> 00:10:31,284 Thank you. 183 00:10:31,284 --> 00:10:33,663 (Cheers) (Applause)