 Corine McGuire is a lecturer in 20th century British history at Durham University. Her first book, Measuring Difference, numbering normal, setting the standards for disability in the Andrew War period, combined history of medicine, science and technology studies and disability history. Her talk is entitled Investigating Categories in the Treasury of Human Inheritance. Hi, I'm Dr. Corine McGuire and I work at Durham University. And I want to start off today by asking you to imagine a scene, something like the one that's pictured here on the screen. So what we can see here is the interior of a home in Britain in the early 1940s. People are taking drinks in the dining room or perhaps the sitting room. So I want to imagine something like this, but in our imagined picture, it's 1943, and a mother is watching a child drink from a cup. Every day she observes the way that the child holds the vessel. And she's checking to see if they start to develop, quote, a little trick in the use of their arms that she's seen her older children employ to help them to drink more easily. She tells the woman who is visiting her home that she recognises that this adaptive move is the first signal, the first evidence of the impact of, quote, the disease common to members of her family. This visitor was Dr. Julia Bell. And she's pictured here on screen as a young woman graduating. And she used this information to analyse the mean age of onset of disease and different genetic classifications of pseudo-hydro-trophic and allied types of progressive muscular dystrophy that she had developed. Julia Bell had started work on biometrics in 1908 under the supervision of Carl Pearson after taking a degree in mathematics from Cambridge University. She was an integral statistician in the Treasury of Human Inheritance Project from 1909 onwards. Although when the First World War broke out and work on the Treasury ceased, Bell went to the Royal Free Hospital in order to obtain her medical degree. And she only returned to the Galton Laboratory in 1920. She then worked under the supervision of First Ronald Fisher, then Lionel Prenrose, and was responsible for writing altogether 13 volumes of 24 of the Treasury projects. What was the Treasury? It was an extensive compilation of genetic disorders published between 1909 and 1958. It included published and unpublished family pedigrees designed to provide material that would illustrate human inheritance for students of hereditary. It formed part of a much broader connected body of research into inheritance in the first half of the 20th century, which was administered by multiple institutions. A major part of Bell's work involved verifying the family pedigrees that had been collected using data from individuals, doctors, specialists, academics, and various social and medical institutions across Britain. So it meant that she had to validate the data that had been collected from families to create these pedigrees whenever it was possible, which required a sensitivity to the domestic world that might well have seemed to be more appropriate for a woman to do, as is suggested by Margaret Roseter's theory of territorial discrimination. So for an example of how this worked, we can see on the two tables on the screen here how Bell was tabulating the influence of the category of parenthood and using that to work out the emergence of hereditary disease. So on the first table, table four, and that's on the top of each image, you can see that it demonstrates a higher age of onset for parents rather than singles, and then table five underneath gives a mean age of onset and age of death in the different cases under discussion. So verifying the correlations between such potentially social factors and tracing the relationship to inherited factors linked to the individual was a really crucial part of Julia Bell's work. She investigated things like parentage, but she also looked at diet, smoking, alcoholism, drug use, and breastfeeding. She investigated how gender affected caregiving norms and what that meant for health. She looked at the tendency and the ability to conceal disability. She looked at barriers to marriage as well as class, education, and institutionalisation. This was critical to her struggle to demarcate genetic influences from environmental conditions. So for instance, Bell noted in the same volume that these tables are from that, quote, it is difficult to say how much of mental backwardness can be attributed to a lack of independence and lack of stimulus to activity of any sort, resulting from the conditions under which the patient must live. She explained the pressing need to understand how disability and disease were, quote, reacted upon by economic and social conditions varying from one period to another or from one country to another. This was also linked to the related need to sort the relative importance of different individuals' genetic susceptibility due to categorisation as part of a group from their ways of living as a member of that group. So for instance, Bell's work involved establishing the apparent impacts of, quote, sex-linked conditions from the effect of gendered norms. She also explained the pressing need to clarify why there was, quote, a very marked difference between the values of sex incidents between the Eastern and the Western races. So what's critical here is that she wasn't just trying to statistically track race and sex-linked conditions. She was investigating why these conditions emerged in the way that they did and questioning the categories that she was using to organise her data. And it's analysis of these categories that I'm principally concerned with. And on the screen here, we have an extract from one of her 1932 reports where she's talking about why congenital dislocation of the hip should occur more in females and cases of cervical ribs as well, cervical ribs, I think. And also talking about cases in children and, of course, children versus adult is another category that she's concerned with establishing more correctly. So as I said, it's analysis of these categories that I'm principally concerned with. Public health more generally in 20th century Britain developed these kinds of epidemiological categories precisely in order to establish whether there was relationship between lifestyle and health. And by the 1930s, there was a real increased focus on the role of the environment on health in the Baltimore laboratory, partly due to the shift from mainline to reform eugenics. And you can really see this shift having been reflected in Bell's work. So for instance, Bell was concerned that sex differences in glaucoma were not due to, quote, basal motor instability in women at certain periods of life as has been supposed, but rather the result of gender differences like, quote, the tendency amongst women to neglect minor symptoms. However, what's really interesting is that Bell reverses this causation when she's considering racial differences in the same condition in glaucoma in response to the point that greater prosperity among, quote, Jewish people in the actors category at that time to glaucoma was due to greater diligence in seeking care. She argued that this actually demonstrated proof of a, quote, Jewish genetic predisposition to nervousness, which then precipitated the disease. Studies of epidemiology more broadly have emphasized that these kind of categories are cultural artifacts, often linked to the politics of inequality. As Ted Porter has recently put it, quote, human genetics could never be confined to the laboratory. And analyzing these kinds of examples reveals how power influences categorization decisions and how the categories used in genetic research, including race, gender, and class were constructed in order to establish disability. And on the screen here, we can see an example of one of the kinds of pedigrees that are using. They look very similar to the pedigrees you would see today. It's a little bit blurred out, but you get the general idea, I hope, of what they were trying to do. And what I'm trying to show with this is that disability was thus central to British eugenics in the interwar period in a way that's not always been reflected in the historiography of the topic. However, historian Michael Rembus has long stressed that disability was central to the evaluative nature of eugenics. While Manian Schmidt's recent work has shown that foregrounding disability within genetics, quote, blurs the boundaries between eugenics and medical genetics. Genetic researchers firmly delineated their work from eugenics after the Second World War. In the interwar era, these two fields were much more entangled in Britain, although they were opposed on significant points such as sterilization programs. But disability was central to eugenics not just because disability was the fundamental outcome that scientists sought to portray. It was only through study of mutated genes that researchers could attempt to understand normal function. So disability was central to eugenics as a necessary concept, as a motivation and a problem. I want to zoom out again from the historiography now and come back to consider what this process of investigation was like for the families that Bell worked with. So I'm not just interested in the mother watching, but it's the child holding the cup that we're really interested in, as well as the relationship between the two. But what kind of methodologies can we use to try and recover these kinds of lived experiences from these kinds of very scientific sources? I want to suggest that if we amalgamate free into related historiographical strands, we can address the creation of disability as a quote, a scientific fact, so a reference to Ligudic Flex work. So the first round relates to work in medical history that pushes back against the sources context to recover the patient voice from medical records and turn the object into the subject. Such an approach can involve recovering voices verbatim from the source itself, even though their perspective is being framed by the researcher. Second, on the screen already, SCS and Scott social construction of technology approaches that can work to reveal the user rather than the designer in studying scientific artifacts. And this approach is one that has been extended to disability objects by historians such as best Williamson, who've demonstrated that quote disability things often defy the intentions of their makers. And I think this is a really interesting way to think about some of the examples of disabled innovation listed in the treasury volumes. And these examples are often coming more so in the footnotes than in the actual text itself. But if we take just a 1928 volume, there's numerous examples of disabled innovation that the families discuss, ranging from a vegetarian diet to prosthetics such as a crux or a stick, your trumpets, spinal jackets, and so on. Reframing patients as users in this way can add to historians efforts to recover patient voices by considering experiences that took place outside clinical encounters, offering access to the experiences of those who did not consider themselves patients. Thirdly, approaching the archive itself as a kind of classificatory force allows us to work out what kinds of systems and structures sorted the relative importance of different individuals genetics to set ability from the categorization as part of a group, which is the kind of crux of this project. And to do this, I want to engage with scholarship from history of science in particular that was worked on things like measurement like statistics and classification systems. These kinds of histories really rest on the premise that science itself is social in a way that the social medical binary model that disability history is built on has occasionally tended to obscure. And although the treasury of human inheritance might seem like a really unusual source to kind of read against the grain to recover disabled experiences, partly because of its sheer size. I think you can find that there are a sort of charge of material about disabled people's lives and their family relationships can be kind of collected and fused into an original and a cohesive mosaic. So for example, to come back again to this 1928 volume that I mentioned on blue sclerotics and fragility of bone. It's not a very good picture on the slide there. It's a little dark but it just shows the front page of the issue. And in this issue, Bell was attempting to identify the onset of several clinical symptoms that might be related to the genetic condition in question. So if you read along the grain, these are examples of medical case studies. But if you read against the grain, they provide fascinating glimpses of the diversity of disablement and its management within families, including indications that many affected individuals considered or conditioned to be a good thing. So for instance, Bell described how one man with hyperextensibility of ligaments, common in association with blue sclerotics, that's a quote, used his extensibility to make a living as quote an acrobat on the stage, who stated that he could do quote loopings in the air. This framing suggests that he considered his condition to be a positive asset. And similarly, Bell tells us one woman quote, volunteered the statement that her free children were all born with eyes just like hers, but the eldest lost a blue in the first year of life. This unsolicited description of the children's eyes as just like hers suggests pride in their similarity to herself. And the use of the word lost indicates that what Bell regarded as normalization or cure of a quote defect was regarded by the mother as a loss. Other women such as the 29 year old to a serbitally commented that quote, she was aware that my eyes are of great interest to nearly every doctor I meet articulated a kind of ambiguity around desirability and normative appearance to reveal a clear tension between the clinical gaze and lived experience. This tension could become active resistance, such as in the case of a man who argued with Bell, that he did not have bone fragility, and that all his fractures occurred from severe injury. In such examples we see the clinical gaze reflected back on to the viewer, and this pushback against the non disabled white heterosexual context of the source enables us to reframe, recontextualize and rewrite these stories from a disability history perspective. And furthermore, I contend that a disability history approach shows how power was part of the struggle to establish disease causation as either environmental or genetic through the investigation identification and separation of biological categories from lifestyle factors. Such a move will show how disability acted as a kind of meta analytic category that sat on top of an organized and gave credence to these other salient categories. And this will not only contribute to the history of eugenics but also consider a set of ideas and practices that were a mesh with eugenics. That is the notion that bodies could and should be categorized to show health and risk to health as originating in the individual, rather than in ways of living. And utilizing inheritance in the context of 20th century genetics reveals how both disability and eugenics relate to this history of categorizing inequality through obscuring the relationship between the environment and the individual. And this is essentially the focus of my forthcoming project when categories constrained care investigating social categories and health norms through disability history in 1909 to 1958, which I'm going to start work on in 2023. Thanks to welcome University Award. And the sources that I've discussed here today represent just a very tiny portion of the material that's available on the subject and that I plan to research. For instance, there's a huge amount of digitalized material online thanks to UCL's legacies of eugenics project and the welcome trust code breakers makers of modern genetics project, and both of which you can see on screen their their website front pages. And what my plan actually is to do is to kind of contrast the investigation of genetic disability with the establishment of acquired disability through looking at the investigation investigation of compensation practices in Britain during the same time period. And framing the moves made to try and classify disability as either genetic or acquired reveals the epistemic work that classification systems, whether statistical or compensatory did to codify interactions between the biological and the social. So the aim is to historicize the creation of this false binary to in order to reveal how data has been used to obscure health inequalities. But by looking at how it's been used to obscure the relationship between the individual the individual environment. And then secondly, the aim is to reveal how disability is acting as this meta analytic category, and that's giving further credence to categories including race and sex. But, as we've seen today these categories weren't fixed. They shifted and they fluctuated in relation to disability in the different contexts of eugenics genetics and compensation cultures that sought to explain the causes of disability and to allocate responsibility for it. By questioning the basis of exclusion or acceptance of socioeconomic factors we can push at the normative scientific scaffolding that supported the understanding of inheritance that emerged against the background of widespread First World War Disabled women and the proto welfare state in Britain. And this context is really significant. This is strange like Alex Molot have emphasized quote emphasizing personal responsibility for health shifted liability. The importance of socioeconomic inequalities diminished in the 20th century just as classifications of standardized types linked to rage and a linked to race and age and sex were being elevated. So by critically engaging with the scientific processes of categorization, we can complicate the biological versus social binary by illuminating the cases the people and the experiences that blurred the borderlines limits. And determining factors to investigators used to attribute disability causation to the environment or the individual allows us to historicize this reality. So my project aims to merge disability history with the history of science to advance our thinking about how both disability and eugenics relates to this broader history of categorizing inequality. And analyzing this struggle to understand how disability and disease were added on upon that by the environment and social conditions and reveals the epistemological power of categories in its creation of disability as a difference that mattered and that could be counted classified and controlled. Reha Benjamin has shown how this process entrenched race categories and techno science by asking quote what social groups are classified corolled course and capitalized upon so others are free to tinker experiment design and engineer the future. Problematizing categories themselves emphasizes their epistemic authority their imaginative power. And most importantly highlights disabled resistance to them. Thank you very much for listening. As I said, I'm, I'm not really yet even at the start of this project so I really welcome comments, thoughts and suggestions, as well as questions and if you want to get in touch with me. That is my email address coin dot McGuire at drum.ac.uk. And I'm also on Twitter far too much. Thank you. Johnny is a medical sociologist and a historian of science and genetics. His current intellectual interests focus on questions of decolonization regarding genomics difference and precision medicine, especially among South Asians and other racialized peoples. This talk is entitled maternal and infant health and genetic histories of post colonial India. Hey, hello. Thank you. My name is R for the valley any. I'm a faculty member at the University of Oregon. I wanted to thank the NHGRI for inviting me to present this paper, as well for organizing an exciting symposium with engaging panelists whom I've learned a lot from what I'm going to present today is a work in progress. This is a work of a larger book project on genetics and genomics, as it relates to racialized communities. My focus is on South Asians. And this paper distills some but definitely not all my findings as I work through my archive documents. Okay, so we're looking at the first slide here and it's entitled cast race and colonial knowledge. This is an image of a survey undertaken by colonial officials officials, and the title is the tribes and cast of Bengal volume one. In the study of genetics in South Asian history of science to threads characterized the salience of race and cast with science in the 20th century. This slide is focused on the collection of biological data, which was useful for colonial projects of knowledge. As Crispin Bates demonstrates the first consist of phrenology, which focused on physical measurements of Indian bodies, ie the shape of the nose size and shape of the cranium skin tone and height. H Bailey is best known for institutionalizing the use of anthropometric data in order to generate racial classifications of Indians in the ethnographic survey of Bengal, which he oversaw beginning in 1885. The second thread comprises the study of blood groups and its correlation with cast in the early decades of the 20th century cast in people have spent books defining it but in insured. It is born into specific cast. There are understandings of high and low and untouchable or dulled cast. And spiritually be or theologically the idea is one can change cast in the next lifetime. As project Mukherjee notes phrenology grew to fall out of favor as a methodology by which to study human difference which increasingly became associated with quote unquote error and observer bias and quote, because humans recorded the measurements that were intrinsic to anthropometric analysis. In the early 20th century, the discovery of blood types in 1901 seem to offer a more and seem to offer more analytical purchase as a scientific methodology by which to accurately study quote human body the difference and quote. The study of blood types was taken up in earnest, after almost two decades of the discovery of blood types by the Polish bacteriologist and serologist Ludwig Hertzfeld and his wife Anna Hertzfeld. One of them worked as volunteers in the medical service in Greece. During their tenure there, they observed that proportions of blood types buried by race with tight be predominating among Indian and African troops. Further, the Hertzfeld's speculate that blood types and be had different points of origin with the ladder originating from India, which they claimed was the cradle of one part of humanity. Published in the Lancet in 1919, their findings suggest that the highest frequency of type B occurred among Indian soldiers whom in their view constituted a distinct biochemical race. But where does the study of human difference go after India's independence from the British in 1947. Did the prospect of the end of colonial rule and the racial sciences which underpinned produced novel directions in biomedical research in postcolonial India. Did Indian medical researchers strive to decolonize the gaze of the human sciences, though they remain dependent on European scientific discourses even after 1947. And did they center concerns about disability and health in its place. Okay, so now we switch to a slide. It's entitled Dr. Jerusha Girad. I'm going to describe who she was. She practiced between 1914 and 1968. I want to suggest that the focus shifted in the postcolonial period toward the clinic and public health concerns which went which went beyond explicit articulations of caste, race and health. Utility of genetics in particular between 1947 and the 1980s lay in the insights it would shed on inherited conditions. Not only would this provide a modicum of preventive patient care, which was absent at the time in India. It could also be incorporated into medical training for students and existing physicians like pediatricians and obstetricians. The clinic and around it are the sites on which I would like to concentrate in this presentation, particularly the work of female gynecologists and obstetricians whose field was growing in postcolonial India in the area of maternal and infant health. I will situate my characterization of the growth of the field beginning with Dr. Jerusha Girad. Born into a Jewish family in Mysore, South India, she educated herself from the age of 11 on merit scholarships completing her college training at Grant Medical College in 1912. As the first recipient of a government of India postgraduate scholarship, she began a residency at the Elizabeth Garrett Anderson Hospital in London, profiting from the openings created by the enlistment of male doctors during World War I. After two years of service, she applied to complete her medical degree with a specialty in gynecology and obstetrics at the University of London. After completing her degree in 1919, she returned to India but could not secure a position in Lady Kamar Hospital in Bombay, which in fact was her aspiration. She filled in for another OBGYN as a locum in a practice in New Delhi and then shifted to Bangalore to work at the invitation of the senior surgeon there. She was appointed as honorary surgeon at the Kamar Hospital in Bombay in 1925 and became a medical officer three years later thus fulfilling her dream. She founded the Bombay Obstetric and Gynecological Society in 1948 and two years later, she presided over the sixth all-India obstetric and gynecological congress which was held in Madras. In many ways, the window-opter Dr. Girat's career reflects the emergence and expansion of the field of obstetrics and gynecology between 1950 and the 1980s. This entailed maternal and infant health being subsumed within family planning strategies, which were aligned with the biodemographic development strategies of the new post-colonial state. Okay, so now we have shifted to a slide. It's entitled, Indian Reformers and Eugenics. We have a photo of several grown women dressed in marriage gowns, marriage saris and marriage gowns in India and they're participating in a march. They're carrying flags that say India and crown colonies and protectors. Before we discuss family planning in post-colonial India, I want to situate it within the particular manifestation of eugenics which Indian Reformers took up in the 1920s and 1930s, which is the period of the photo. In these decades, eugenics societies were formed throughout India, comprised as they were of urban professional men and some women who debated the state of the Indian nation and the causes of its quote degeneracy. These reform-minded societies sought to identify the causes of India's social and therefore institutional economic and technological decline from previous quote imagined eras of age and glory. Sarah Hodges notes, while much of Indian eugenics resemble contemporary eugenics movements across the world, eugenics in India was also produced by and productive of uniquely Indian debates and circumstances. The distinguishing features of Indian eugenics were produced through the attempts to resolve the tensions created by Indian eugenicist perceptions of an east-west divide in civilization as well as science. In particular, eugenics in India fed into and was supported by late colonial debates on national progress, scientific modernity, and most important marriage reform. That's the end of her quote. Unlike eugenics elsewhere, Indian eugenics did not pressure the colonial state to promote sterilization, nor did they undertake genetic research on hereditary. This would all come later, as I discussed in the following sections of this paper in part. Marriage reform was the locus of these eugenicist debates and anxieties because they viewed the institution of arranging caste-based marriages between comparatively older men with girls as a consequence of dubious, the widespread sexual practices based in quote licentiousness, degeneration, and superstition end quote. Again, these are their words. In the view of reformers, child marriage was the root cause of a host of social ills, which included congenital differences which led to disability, sexual weakness or importance, sterility and over procreation, that's a quote, women's poor health, sexual perversion, and children prone to thievery or insanity. Child marriage led to quote unquote unscientific child rearing, which lay at the heart of India's quote unquote fall and Europe's emergence as an impure power based on scientific innovation. In the place of science in India's history and the notion of quote East versus Western science end quote, fuel the reformers anxieties about national progress. But because Indian eugenicists focused not on a science of genetics, but on the peculiarities of marriage practices to explain and investigate the key eugenic mechanism of heredity. Eugenics was able to emerge in the writing of these eugenicists, not as a foreign import but as part and parcel of India's cultural and scientific heritage. Indian eugenicists created a register on which one could publicly discuss sex knowledge quote that's in quotes. In polite company, as a form of scientific rhetoric which could transparently share insights about sex and heredity, as well as questions and curiosities that much of the population was thought to have. In reality, however, the effects of Indian eugenicists culminated in the 1940s in focusing on promoting maternal and infant health, particularly through the introduction of contraception as a way to improve the Indian nation which was incorporated into the family planning efforts of the postcolonial state after the British left in 1947. Okay, so now we switch to a scan of India's first five year plan it's just the title page and it says first five year plan. That's also the title of the slide. In early postcolonial India the growing size of the Indian population became a serious concern. The planning strategies were officially adopted as part of the first five year plan in 1952. However, by 1960 failures in food production lagging socio technical development and concerns about national security created a perfect storm with quote over population and quote at its center. In my daily Srinivas suggests growing fears of quote a population bomb and quote, with its epicenter in South Asia haunted the public imagination in both India and the West. Within India this fueled the targeting of lower cast lower class and I do I see women in desperate attempts to curtail their reproduction in the West racialized discourses mark black and brown women's bodies as responsible for global population paid workers and volunteers impose themselves on these communities. And we're empowered by the state to spread contraceptive use through quantitative targets and financial incentives for family planning. Okay, so now we've shifted to a slide entitled genetics and guide in gynecology and obstetrics. And we have a scan of the first page page of an article that's entitled congenital birth defects in regional medical college hospitals money poor. The sources history of medicine 2009 Indian gynecologists and obstetutions very much allied themselves with the state in leading the charge of family planning. Its research activities focused on the study of contraception and its advocacy work centered on the legalization of abortion which took place in a change in the statute to 1971. If we if we think of the field is having a biography one will notice its commitment to maternal health. So the rest of the 1970s starting first with the international seminar on maternal mortality, perinatal mortality and reproductive biology which was held in Bombay in 1969. One of the things that I haven't seen in my archival documents is discussion of the rule of these professionals in poor sterilization. This came into being in the 1970s around the mid 1970s during the years that a state of emergency was declared under the new Prime Minister Indira Gandhi. And this is probably India's most notorious period where forced sterilization to place on lower class and lower caste women in India. But again, it's not discussed in the journals that I have looked at but I definitely intend to ask my informants about it when I collect oral histories and interviews. In the 1980s the scope of the field expanded significantly to include areas that were associated with women's health and as well as well as biomedical innovations. And then began to work in the fields of infertility genetics endoscopy and imaging science genetics along with new diagnostic tools concentrated on a host of conditions associated with pregnancy or prenatal detection of conditions one of which was congenital birth differences. In the 1980s congenital birth conditions were associated with close to a third of stillbirths and 7% of live births. In the 1980s the scope of cleft palate elementary and GIS track anomalies, or those of the hip skeleton and brain strikingly studies that I interpreted do note that such conditions result in quote in capacities, ie disabilities for newborns who survived the neonatal stage. In the sources that I reviewed so far, I'm definitely not done in this space. But this is, these are some of my observations so far. So genetic and epigenic epigenetic factors could be discussed together. So for example, these birth conditions are correlated with the first birth, or as in the case of lower class mothers from the fifth birth onwards. While genetic factors are acknowledged, these kinds of conditions were also correlated with the recreational use of barbiturates and dexoanphetamine. The degree or lack of education are also implicated with congenital conditions causing texoplasmosis as well as smoking and alcohol consumption along with syphilis which stigmatize and presume women's personal and sexual practices. There are explicit some but certainly not all of these factors underline social practices, which might fall outside middle class and high caste norms of some of these female gynecologists and researchers who are writing these articles. I would characterize the gynecological and obstetric research in the 1970s and 80s, which employed genetic tools focusing as it did globally on what were referred to as chromosomal differences. The medical texts that I interpreted in the 1980s read as a tutorial for gynecologists and obstetricians to collect, prepare and analyze samples screened for battery conditions. The diagnostic use of family history to identify some hereditary conditions along with banning procedures to identify quote structural anomalies. Many of the chromosomal differences focused on variations which generally fell into two categories. The cases being examined were missing a chromosome so they had 45 instead of the more common 46 chromosomes. More interestingly, the other set of cases seemed to vary in their chromosomes associated with sex, specifically triplodes meaning cases in which three chromosomes were found, XXY instead of the XX or XY formations. To close, the evidence of the field in the 1970s and 1980s suggests that OBGYNs writing up their clinical findings in this period, appear to emphasize properly employing the methods of medical genetics in their studies, thereby increasingly making correlations between chromosomal variations and references to quote incapacities and quote, which today we call disabilities. In many ways, what I've described is the emergence of the field of obstetrics and gynecology in India as a laboratory for practitioners to establish their science and field using the latest genetic techniques and chromosomal study. In this period, gynecologists and obstetricians focus on clinical work, not basic science, to address concerns in maternal and infant health, which align the field and profession with family planning policies of the state between 1960 and the 1980s. Jane Safitz is an assistant professor of cultural and medical anthropology at Denison University in Granville, Ohio. Her talk is titled Irreducible Alterity, Violence and Activism Surrounding Oculocutaneous Albinism Type II in Tanzania, 1880 to 2022. This talk is called Irreducible Alterity, Violence and Activism Surrounding Oculocutaneous Albinism Type II in Tanzania. In November of 2015, I sat in the back of a large auditorium at the Julius Neurere International Conference Center in Dar es Salaam, Tanzania. And for three days attended session after session at the first ever Pan African Albinism Conference. The surrounding me were representatives from Albinism Rights organizations all across the continent, as well as journalists, scientists, ambassadors, politicians, delegates from the UN European Union and African Union. We all tuned in with our headsets in English, French or Swahili to panelists speaking to the myriad challenges faced by Africans with Albinism in the last two decades. The conference's theme of making attacks, stigma and discrimination a faint memory alluded to many of these challenges from the complex vision problems of those with Albinism and the cancer causing rays of equatorial sun to the spate of recent violence dubbed albinicide that has engulfed the continent since 2006. As the Canadian ambassador to Tanzania reminded a crowded banquet hall the first evening. Rumors attesting to the supernatural potentials of albino body parts had given way to maiming, murdering and grave robbing, allegedly to satisfy demand in a clandestine market for albino body parts. At the hands of traditional healers and their patrons, who have been said to falsely believe in the power of albino bodies to generate wealth. This particular narrative explaining violence has circulated widely since 2006. The journalistic academic and humanitarian publications across things like documentary films and young adult literature. Transnational Publix are taught that African Albinism is misunderstood by Africans who ostensibly lack genetic literacy and in its place resort to superstition and fetishism deeply rooted in quote African tradition. At the time of the conference, I was living in Tanzania conducting ethnographic and archival research on Albinism, full time. Since this is where violence had been most acute, and where the Albinism rights movement was most robust. I've spent approximately 160 documented murders in the past 15 years. And since 2012 I've spent over 30 months investigating rumors about Albinism, as well as the broader narratives about violence and movement for Albinism rights. I've been living with a family in the Mwanza region speaking Swahili and engaging in virtually all aspects of their daily life from church to chores and from weddings to neighborhood parties. It also meant conducting interviews and participant observation with Albinism activists. This, this was basically humanitarians doctors scientists missionaries and journalists, people with and without Albinism, Tanzanian and international. As they work to spread biomedical rights based and biblical understandings of human difference. So this is to say that I knew many at the conference quite well. At the same time, my research also led me to traditional healers chiefs and extractive laborers, mostly artisanal gold miners and fishermen who were maligned by these narratives about violence, and who in some instances, used albino body parts non biomedically, though not necessarily in ways that were violent. My approach was also historical by conducting oral histories and using medical admission archives, as well as those kept by the British colonial government and Tanzanian state. I traced various practices of engaging Albinism in ways that both accord with and exist beyond genetics. At the conference, the American geneticist Dr Murray brilliant explained to attendees that ocular cutaneous Albinism type two, the kind most common in Sub Saharan Africa is caused by a deletion on the PG gene that results in low levels of the pigment melanin, as well as in an under developed optic nerve, nystagmus or rapid eye movement and sun sensitivity. Also explaining his hypothesis that being a carrier for the mutation offers some protection against leprosy brilliant suggested that historically people with Albinism were at best socially invisible, and at worst victims of infanticide, and that it was only in the mid 20th century that missionaries doctors and humanitarians worked to normalize beliefs about Albinism. Like much of the discourse surrounding African Albinism, his talk was premised on a divide between traditional healers and their patrons on the one hand, who are said to traffic in rumor and shadowy belief and callous to other suffering who are hired in tradition fetishize Albinism and orchestrate violence. And then on the other hand Albinism rights activists who are said to communicate facts that enlighten rather than obscure, and that counter a quote albino fetish through liberal road modes of recognition rooted in models of disability and humanitarian identity politics. As a medical anthropologist charting a somewhat different course. My approach to Albinism is not one that assumes a priori the existence of a biomedical reality to which cultural beliefs do or do not adhere. I approach Albinism as multiple at times instantiated as a genetic condition, and at others instantiated in traditional healing practices as a potent catalyst in Dawa, which is a Swahili word that usually translated as medicine. Centering the multiplicity of Albinism allowed me to develop an understanding of the fetishization of Albinism that runs counter to activist discourse. So in my talk today, a queer understandings of albino side that bifurcate an indigenous cosmology said to fetishize Albinism through an occult signification from medical epistemologies that are said to emanate from outside Africa elucidate the nature of difference and undergird humanitarian responses. By historicizing Albinism at the intersection of multiple historical genealogies and epistemologies. I argue that violence and activism are not only co constitutive, but enabled by shared histories of encounter that account for their fetishization at the hands of traditional healers and geneticists alike. Today two of the conference, well known activists, among them the Kenyan Justice Grace, Grace and Googie, the disability rights attorney and Tanzanian ambassador to Germany of Dala Paz, and the Canadian businessman and founder of the NGO under the same son, Peter ash, debated the relative advantages of legal classifications of disability. So particular countries, including Tanzania had already enshrined Albinism as a disabling condition. This debate centered Albinism organizing at the UN, where earlier that year, activists had successfully petitioned for the creation of an independent expert on Albinism. And this was a move that led to an official classification of Albinism as a quote, specific people group. So there are around 50 working groups designated to advocating either from marginalized groups like the elderly or internally displaced people, or for specific issues prone to human rights violations like torture or trafficking. As Peter Ash explained at this panel, the UN treats designations of disabled and specific people group as mutually exclusive. Given this, he explained that his organization preferred the latter specific people group for it more aptly described the plight of Africans with Albinism. So he elaborated for my brothers and sisters with Albinism in Africa, their biggest problems aren't bodily. They are the bogus spiritual beliefs and the fact that African traditions don't understand Albinism. So rather than claim status as disabled then he argued for recognition on the basis of their fetishization, their irreducible alterity their irreducible difference at the hands of unknowing others. In the following months, I dwelled on ashes claims as I tried to unravel exactly who might be fetishizing Albinism, in what ways, and from what ends for him and many others. Violence resulted from the mystification of their genetic condition, which he attributed to African tradition, like activist academic and journalistic explanations of violence. His premise rested on linear narratives with very clearly delineated causes and effects, as well as on binary oppositions between occult violence and humanitarian activism. And yet, I found the water surrounding Albinism far murkier. For instance, by working through the publications of late 19th and early 20th century biometricians and Genesis. I came to see a centuries old Euro American enthrallment with African Albinism. This literature builds on the work of enlightenment naturalists and philosophers who experimented with the bodies of Africans of Albinism. They did things like display them at ethnological exhibitions and private medical events across Europe, and in effect created a European market for albino body parts. The running notions of race in the late 19th century, surely contributed to Europeans preoccupation with Albinism, since the mere presence of, quote, white Africans confounded racial categories, and suggested something of their potential malleability. And if I trace such fixations and you could call them fetishizations through the 19th century, when the professionalization and institutionalization of biomedical sciences meant that an increasing number of experts from ophthalmologists and dermatologists to pathologists and surgeons set out to explain aberrant whiteness among Africans. Christian Carl Pearson, for instance, in his monograph on Albinism in man, sought further knowledge of the frequency and inheritance patterns of Albinism. To this end, he compiled pedigree charts, ethnological data, medical reports, hair and skin samples, travel logs and photographs. And while he was unable to develop a generalized theory of Albinism, his text, not only called for more data in the way of albino organs and tissue samples, it was also peppered with conjectures about the inability of Africans to assimilate citing anecdotes from missionaries, traders and colonial medical officers. He wrote of British East Africa. The natives, Dr. Stannis says, have no special word for albino. They are not accounted for in any special way. They say they have just been sent by a mooga, a word which embraces unknown powers, probably they were killed from time to time at birth. Let me bring this up first to highlight that Africans of Albinism have long been central to the production of biomedical knowledge surrounding Albinism, and that Euro Americans have long been central to the production of Albinism's occult signification, an observation that makes untenable any neat distinction between the elucidating knowledge of biomedicine and the supposed obscurantist beliefs of healers. I want to underscore a Western anxiety surrounding Albinism that has in my estimation been projected onto Africans, and that Tanzanians specifically are patently aware of. So through interviews with elderly chiefs, for example, I learned that since early colonial encounters late 1800s, early 1900s, many Tanzanians have found curious, the value that African albino bodies appear to hold for others. Not only scientists and missionaries but now, for instance, humanitarians, journalists and anthropologists. Often during my field work interlocutors asked me what doctors in my country were doing with albino body parts, suggesting that it might actually be Westerners facilitating violence in a market for albino body parts, not Africans. Thirdly, this Euro American fetishization of Albinism has only intensified in the decades since Pearson's work, whether in the 1930s when the British created a new Swahili word for albino. In the 1950s when missions built schools for children with Albinism, or in the 1970s during the height of Tanzanian socialism, when Dar es Salaam received its first radiation machine, and oncologists finally able to treat skin cancers began going door to door, searching for people with Albinism to count in their senses and enroll in clinical trials. Organizing led to the creation of the Tanzanian Albinism Society, which was funded then by the socialist state and now by international disability rights organizations. And it aimed to instantiate Albinism as a medical legal humanitarian category. And in the 1980s during the UN's decade of disabled persons successfully advocated for a national definition of disability, inclusive of Albinism. This flurry of activity did not solidify Albinism as a particular kind of subject object, but rather led to proliferating questions about the ontological and epistemological status of Albinism, and about who finds what valuable and why. Throughout the 20th century, transdisciplinary literature on African Albinism abounded, always with piecemeal anecdotes about African beliefs. For instance, a 1979 publication by the Swedish anthropologist Stuart Lagerkrantz drew heavily on Pearson's work, citing many of the same missionaries and travelers who alleged that people with Albinism were sacrificed, their flesh quote an ingredient in potions. Spanning 300 years from Morocco to Lesotho to Ethiopia, he constructed a general narrative about the occult signification of Albinism across Africa, wherein their anomalous nature was both fetishized. Well, it may seem that organizing at the UN or publishing academic literature would not inform a rural healer's practice surrounding the use of particular ingredients. Activists like the retired oncologist, Dr. Jeffrey Wande, understand that collective efforts to make the category Albinism visible also enabled violence. As he explained from his offices at the Ocean Road Cancer Institute after the conference, people with Albinism quote became visible to the wrong people. The entangled and co-constitutive nature of Albinism at violence and activism became clearer to me when, for instance, violence intensified following a 2009 report by the Red Cross that quoting a police officer stated that a full set of albino body parts is worth $75,000. A statistic that has been reproduced hundreds of times in the years since. Confusion surrounding the demand for albino body parts became even more palpable, when every so often someone would be arrested for harboring an albino bone, and it would come out that they were trying unsuccessfully to locate a buyer. That is, they were acting on the presumption of someone else's demand. Layered together then entangled knowledge practices surrounding Albinism from genetics to healing and in Bibles to UN charters suggest the need for far more nuanced understandings of how a genetically defined minoritized population becomes valuable. In the Q&A following the conference, a doctor from the Central African Republic commented that people with Albinism were twice disabled, once by equatorial sun and low vision, and again by a society that misunderstands difference. Yet others pushed back against Ash's claims, arguing that international recognition as disabled enabled important protections. Ash admitted to the difficulty in classifying Albinism, we are not a racial group, he said we are not all disabled, but stigma is everywhere, and this is what unites us. So, what then do we make of an international classification based on what Ash's organization calls the mystical nature of Albinism. For one, it seems that any claims of fetishization must be located in the interstitial space between biomedicine and African forms of healing, as well as between binaries of activism and violence, fact and rumor, Europe and Africa visibility and concealment. It also seems that attempts to remedy violence by further partitioning knowledge systems and practices, events by activists recent efforts to further criminalize non biomedical healing in Tanzania. Perhaps miss that motives behind violence may be far murkier than reported on, and thus that solutions must adequately capture this complexity. In this context, the UN's inability to recognize more than one designation, not withstanding. I wonder what it might mean for Albinism rights activists to lean into the multiplicity of Albinism and the entangled encounters that have enabled its overvaluation. That is, perhaps by beginning from a premise that neither genetic explanations of difference, nor medical legal classifications of disability necessarily elucidate. And by accepting that non biomedical understandings of Albinism are not inherently violent stakeholders of all kinds might begin to quell some of the spectacle that has surrounded people with Albinism for centuries, and for once allow a minoritized population to live with difference, among others. Thank you. This is Christopher Donahue speaking. It is my honor to introduce Dr. Neil Hanchard, our moderator for the next question and answer session. Dr. Hanchard is a senior investigator within NHGRI Center for Precision Health Research and the head of the childhood complex disease genomic section. Dr. Hanchard received his MD from the University of the West Indies in Kingston, Jamaica, after which he was awarded the Jamaica Road Scholarship to the University of Oxford in the UK. There he completed a D fill in human genetics and clinical medicine, reworked on population differentiation, genome variation and natural selection in a major histocompatibility complex. He has provided insight to the population genetics of the mutation that causes sickle cell disease, identified novel genes in the development of congenital cardiovascular disorders and rare Mendelian disorders, and has made inroads to understanding the pathogenesis of diabetic embryo healthy, severe childhood malnutrition and transfusion, although immunization in sickle cell disease. Over to you, Dr. Hanchard. Thank you so much, Chris. It's been a real pleasure and an honor to be here. The papers that were presented today were just truly astounding and really sort of concretize, you know, some of the, some of the stickier points as it relates to genetics and the irreducible subjects. I do want to just have a just reminder for people to put their questions in the question and answer or send via the email that's in the chat. And in the meantime, I thought maybe we could kick things off just by having each of the speakers, just sort of sort of reintroduce themselves, and we've had three back to back to back very quickly, and give some of their self description. I'm going to start with Dr. Valiani. Yes, hello. Dr. Hanchard. Thank you to the organizers at NHGRI and University of SUNY Buffalo for organizing this amazing symposium. I am Arfa Valiani. I'm a South Asian man. I have salt and pepper hair parted to one side, and I'm wearing a orange t-shirt representing reconciliation, which was the previous Monday for indigenous communities. Ken, I'm wearing a charcoal colored shirt over the demandor in color. Great. So I will go to Dr. McGuire. Hello, I'm Connie. I'm a white woman with dark hair, the eyes and I'm wearing a white blazer. My office is in the background. Dr. Saffitz. Hi, I'm Jane Saffitz. I am a white woman with brown hair, a gray button down shirt, and big round glasses. Thank you so much. And I am Neil Hanchard. I am a male of African Caribbean heritage wearing a blue shirt, a dark gray jacket, and have a blank background. So, there is one question that's come up in the Q&A. And Belinda Spinoce says, as a co-sharer of the MCR1, MC1R gene, with some of those with albinism, there's been research suggesting that the reason why people with red hair in Northern Europe migrated were for the same reasons. What are the migration patterns of people with albinism? And do they find better success elsewhere? And what kind of success does that look like? And that seems like a question to Dr. Saffitz. Sure. Thank you. From my understanding, and I'll speak only about oculocutaneous albinism type two. The mutation originated in West Africa prior to the Bantu migration, so like prior to the spread of different language groups who moved across West Africa into Eastern and Southern Africa around 5,000 years ago. This makes albinism or oculocutaneous albinism type two far more prevalent in sub-Saharan Africa than in say, Europe or North America. And it has also meant that there is a larger percentage of people with albinism in the US who are of African ancestry. At least in Africa, there are not really places where folks have necessarily fared better since equatorial sun tends to be a difficult issue for people to face across the continent. And since recently violence has occurred in around, I think, 25 or 27 different countries in Africa. So in North America, the problems of skin cancer are much less severe, but there are other challenges related to low vision, stigma, and discrimination. Thank you Dr. Saffitz. I had a question for Dr. McGuire. You know, as a clinical geneticist, we learn about Julia Bell's classifications and so we're sort of very familiar with her and how well those classifications actually translated to the genetic variation that underlies some of them, particularly for her fingers or brachydactyly, as it's called. My question, however, was that you point to disability that was not necessarily viewed as disability by the persons who, to whom this was sort of like put on when you talked about the blue sclerotics. And I wondered whether you had a projection about what disability history might say about the current period where, as we do a lot of this sequencing, for instance, in advance, you might identify someone who is not, is sort of asymptomatic or perhaps pre-symptomatic, or, you know, you might describe someone at risk for something that's only going to happen much later in life. And in the same kind of vein about people pushing back, do you think that we'll end up in a similar kind of situation, and what might be the consequences of that? Yeah, that's such a great question. And that's definitely close to the lines around which I've been thinking about when developing this project, which is partly why I spoke about the mother when I started the presentation, because one of the things I am really thinking about is how this was for other members of the family carrying their recessive genes, whether they then consider themselves disabled or not, and what it was like sort of waiting to see if something was going to happen or not. So it's the kind of relationality that I think is especially interesting and maybe something that is just starting to be explored more in disability history. I think that Turner and Daniel Blackie in particular have done a lot of work on families and connections. I'd love to know more actually about how much you are talk about Julia Bell, because there's not a great deal of work about her, but she was obviously completely prolific. It's an interesting figure when you're in discussions with people that try and make this really strong cut off between eugenics and genetics. Of course she was there. You know, she's a good example of the point that it's a lot of the same people. This is true. And, you know, I don't think it's a general teaching, but certainly any time we've had a patient who had brachydactylic, we had to learn about Bell's classification and work through it from there. Thank you very much. So there's another question in the Q&A, which is for Dr. Valliani asking whether there is any difference in stigmatization in genetic diseases and disabilities within the cast hierarchy, or any difference in health accessibility. Hi, yes. Thanks for that question. Yes, there is. The work of Michelle Friedland, for example, demonstrates challenges to accessibility, particularly for people who hear differently in India. And I think recently she has written about how new partnerships with private providers complicates accessibility to accessing hearing aids, but also even just the new kinds of hearing aids that are supported. And the kind of medical support that's needed for it and the technical support that's needed, that's, there are huge differences in terms of accessibility. Because they're so expensive, right? And so for the large majority of the population, which is below the middle class, that is a challenge to accessibility. Stigmatization in genetic diseases and disability within cast. It's kind of double edged. I would say, I mean, the thing with cast is that its differences are not tolerated well. I mean, it is a hierarchy based on fixing differences into cast. So it's very much about, in some ways you could say every cast below the high ones are stigmatized. So, you know, if you have a disease or disability, I think that can compound your differences. But I have to say that at the same time, interpersonally, there's a, my experience has been that for the most part there's also a lot of compassion. So if you have a disability, just interpersonally, you know, I think what you see is people try to accommodate someone who is disabled. It depends on the kind of disability as well. So I think that, yeah, in a way, you know, just, I'm talking in terms of sociability, so person to person interaction in the street, or like within us, within like family or among friends. Yes, there's certain kind of awareness when it comes to disability that in some ways is more pronounced than I've experienced in other places in the world. But again, it depends on the disability and also it depends on the social group you're with. So that's, that's how I would answer that. Thanks for the question. Great, and I'm going to say one question of my own from Dr. Saffitz, which, you know, is more of a curiosity question, but just kind of had to ask, which is that you sort of noted that there is some aspect of the fetishism of albinism that was sort of brought to Africa. And I wondered whether that extended to any of the animals where is rhinos and crocodiles and so on who all have albinism and whether that extends there as well, or, or is it more sort of like how it used to be where it's just, you know, a different type of animal. Thanks, sure. So I found that certainly animal, various animals with albinism were central to like the research on the genetics of albinism, certainly that was not as much picked up on by Africans, especially because many work very, very strongly to draw like a strict separation between humans and other animals. But that has actually in recent years changed, because one of the strategies that activists employ is to, they, you know, in their seminars where they teach, you know, about recessive inheritance they show pictures of like an albino crocodile and an albino tiger. They show pictures of like families with albinism all around the world as a way of trying to normalize the condition and say hey this is something that occurs in people all over the world in, in all different kinds of species. So it's a very recent tactic, probably just in the last 15 years, mostly as a way of trying to point out albinism as genetic. Fascinating. I also wanted to sort of have a more, a more general question, which is that all of you have referred to policies or actions or events that in in some ways were sort of forced upon groups and it created these kinds of categorizations, which then fed into sort of the eugenics idea about sort of people mindedness etc. And I wondered whether from a historian standpoint, you view that these actions rise to the level of meeting an apology, a formal apology, this is something that is now very prevalent within, you know, a number of different societies, genetic societies and others. And if so, from whom, whether it should be the state or the medical establishment broader or others. And I just kind of wanted to get your, your take on that. So I'll start with Dr McGuire and we can maybe I'll go around. I have an interesting question that I have thought about less. I would say there is attempts in the UK to do this kind of work it's a little bit more difficult to see where it should come from because I mean eugenics was such a pervasive ideology that stuff through all different kinds of classes and parts of society. And I know that, as I mentioned on one of the slices this legacies of eugenics projects at UCL and I think they may have done something like a formal apology or statement or Professor Joaquin at least has been leading on that and I think that's been. I think it was a good statement I'm not sure how well received it was by the university. But it's and they've renamed a lot of their buildings as part of that. And of course, UCL isn't the only location where this was happening the work that I'm looking at was funded by the Medical Research Council, which is partly funded by the state but independent of the state at that time so again it's a little bit difficult to know of course the Medical Research Council are still working and funding and so it would be interesting to think about how that would work and I think you know what's really interesting about this work is kind of complicating the history of eugenics and really showing how much it infiltrated into to scientific work. And one of the things that have really inspired me is Marion Schmitz work in the US where she looked at how these kind of proto geneticists or or eugenicists were trying to help people to continue to have deaf children if they were in deaf families. I haven't really found anything like that so far, but there are people like Maria Caladi working at UCL online open rows who I think is trying to make the argument that he's really articulating a kind of rudimentary version of the social model. That's really interesting to me. I like looking at the sort of gray areas in this work. But for me what's most exciting is looking at the trying to find a voice of the disabled people themselves and you know it just kind of links into your last question but it's clear that the people like Julia Bell were careful not to let the families know what they were doing. And if they kind of she says something like if there's any hint of a whisper or a whisper of that then they have to kind of retreat because then they know they're not going to get straight answers from them, but there's definitely evidence I think from her visits that sometimes these families were just having fun with the researchers. It's a very funny extended discussion where she's trying to speak to them about whether or not they have large heads in the family, and the kids are all saying oh yeah dad he can't he can't get a hat. Yeah. And it's very clear to me that they're kind of making fun of her but she's you know diligently recording all of this data as important data. So we'll see where it goes but thank you for the question and I'll keep thinking about that. Definitely. There's always a lot of colonial tension as someone who's my father colonial state as well. Yeah, I mean I, I mentioned in my paper. Certain kind of eugenics articulation that focused on child marriage. I think the paper focused on the post colonial period. And, you know, in, in most of the cases, well I would say particularly for the post colonial period. The things I looked at really focused on lower class lower caste and minorities in India. And so the thing is is that psychology assumes that these onslaughts are over. And but the, the unfortunate realities they're not I mean for sterilization maybe isn't taking place as a teacher in the emergency in 1975. And so, but I think just to survive and live for these groups is still very, very difficult if not more difficult now than before so. Yeah, I mean I don't think there, there's an opening actually for an apology because many of the problems are still occurring. I'm going to shift and sort of combine the, there's an attendee question in the chat with a sort of broader idea, which is how we think about disability as an identity versus disability as a clinical state. And how do we make our discussions of disabilities and the reality of disabilities more nuanced. And that sort of relates a little bit to the, to the question that's there is that one idea is, you know, do we just need to involve a broader group of support in how we interact and how as physicians or medical geneticists, we don't, we don't consult patients or we speak to patients is it just need to be broader is it, is there something that needs to be at a completely different level of discourse. To in order to make it, you know, more to sort of capture the complexity that everybody has really talked about today. I'll start with Dr Saffitz because you sort of alluded to this a little bit when you talked about, you know, the many, you know, taking a step back and not viewing this as just like a genetic disorder that then has these sort of traditional beliefs on top of it, but taking this sort of multi centric view. Yeah, thank you. So, I mean, there is currently in Tanzania and elsewhere in Sub-Saharan Africa, fairly comprehensive teams of providers, working on things like access to sunscreen, wearing protective clothing, screening early for skin cancers. Low vision problems tend to be really, really complex. So there are caravans of ophthalmologists that come and teams of psychiatrists. So, so within, like within biomedicine, it is certainly comprehensive. One of what I would like to argue is that that's insufficient in so far as the kind of spectacle surrounding albinism exists not within any one particular medical system or any particular one, like geography or epistemology, but in the entanglement between them. So I would say that, you know, the current position of most activists is to treat traditional healers, you know, non biomedical healers as precisely the problem and refuse any kind of interaction with them, which I think is difficult considering their prevalence in the country and the relative posity of biomedical doctors or the distance that some people have to travel to doctors. They're trying to criminalize traditional healing further. And while I understand the impetus to that. I think that like a more comprehensive approach across multiple medical systems across different instantiations of albinism actually like embracing the multiplicity would actually do more to reduce violence and improve health outcomes, then then remaining like firmly entrenched within a particular way of knowing. That's, that's a really interesting answer and really well said and I wondered whether any of the other panelists felt, or how the other or how are the panelists felt but also sort of, is that, you know, is that something that's a thought process sort of unique to the sort of OCA, albinism type of situation that has currently been set up, or is it something that, you know, is is true, you know, sort of broadly across all of the, you know, the many disorders that have been discussed today. I'm just going to leave that one open. I have something short to say. If you notice in my paper I didn't. The word I use for congenital birth differences was differences, but the actual the clinical word in the scholarship is actually defects. So I think, you know, one of the problems is the fact that that, and I think this was mentioned in in this panel and the previous panel is that there's such a strong ableist set of assumptions within the medical community so you know when you use that language to begin with it gives away the what the approach is right which is a deficit model somehow you are different from the typical archetypal body. And I think that's where the problem starts actually because you know that no one really fits with that at that typical or archetypal able body no one is completely actually able to understand their their degrees and variations and so I think that that's an important starting point in the language and the approach is to be aware of the ableist assumptions. And then, you know, and I think, you know, our keynote speaker, Jay, like, you know, one of the interesting things and tragic things but it's also inspiring is the resistance of communities that here differently have had to ableist assumptions about you know what what what what a hearing aid should what is it exactly aiding right because, first of all, it's the arrogance of someone who can hear which, you know, especially with the latest iteration of the technology they understand what someone who's hearing disabled hears and how they hear right is is really is very problematic so I think, you know that's that's also like an example of how this this has been challenged, you know, in an organized way to, you know, just the assumptions, and therefore the treatments and the technologies that could provide accommodations, right, it's not to say accommodations are desired it should be given as a choice but those get designed. What exactly what exactly the difference is those are all things that I think have to be interrogated for their like the ableist assumptions behind them. You know, I don't think anyone could say better that was fantastic at you know, especially like that idea that, you know, if there are if there are things that are available for, you know, whatever utility that that remains a choice, and that there's no judgment placed upon that choice. So we are just about out of time but I did want to just have Dr. Savage answer one other question that's in the Q&A which is whether the sort of milder version of albinism type three albinism where the skin coloring the lack of pigment is not as pronounced as type two. And is there do they have the same issues. That's a good question. There. So there's the prevalence of, of, like, yes, multiple kinds of albinism, including just ocular albinism, which is much much rarer than OCA to those with with partial pigment. Because the activist discourse leads us to believe that, you know, like most Tanzanians are incredibly dark skinned and most people with albinism are incredibly light skinned such that there's a really dramatic juxtaposition that is partly responsible for violence. The reality is there are a lot of people with partial pigment, and there are a lot of Tanzanians who are light skinned, and it's very often not really clear who has albinism and who doesn't. It's often not something that a family necessarily notices or even has any sort of questions about until the child goes to school and has vision problems. It tends to turn people on to the, like the presence of albinism. So those with more melanin tend to fare better in terms of sun protection and better in terms of violence, but, but not, not necessarily and not across the board it really varies. Thank you so much. It's been so enlightening and so informative. So, so thank you again and I'm going to hand back over to Chris to sort of take us out. Okay, so thank you so much. Dr. Hanchard, Karine, Arafat, Jane, for this really, I think important discussion that I think our audiences have really benefited a great deal from. We will be on, and also thank you to our interpreters and our captioners as well. We will be on break for the next hour until two o'clock. Please join us then and thank you again and we'll see you soon. Bye bye. Thank you. Thanks to our captioners and our interpreters. Take care everyone.