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    • #17026
      Jenny Livingston

      As I’ve probably mentioned before, I studied Psychology and Sociology in school. Some of my very favorite courses examined intersectionality and the many ways in which our lives are impacted by our varying, overlapping identities and experiences (things like race, gender, religion, sexual orientation, class, etc.).

      In recent days, as we’ve discussed Trikafta accessibility and how it varies by country, I’ve been thinking about how our individual experiences with CF differ so greatly, and how any number of factors can influence outcomes. For instance, surely Bailey and I have different CF and healthcare experiences because she is deaf and am not. A person in South America who has limited access to even basic CF care will have a very different experience than my own. Someone in the States who does not speak English may struggle to navigate the healthcare system due to a language barrier, whereas I do not have that same experience. A person who is transgender would certainly have different experiences from my own and may face prejudices or misunderstandings that affect their CF care.

      So, I’m curious… is there any piece of your identity or life circumstance that has influenced your care or experiences with CF? (I don’t mean in the way that we are all individual and conceptualize/experience the world in different ways. I’m specifically wondering about these social categorizations or hierarchical classifications that can influence the way people and institutions of the world receive us. I hope you’ll humor my sociological approach to this question 😃)

    • #17039
      Paul met Debbie

      What a nice question! To be honest, intersectionality is a new word for me. Although it originates from the legal area, this could be explained by the fact that it was only invented in 1989 after I graduated and became a law teacher, and my own expertise (civil law) did not “intersect” with the discourse in which the term started to flourish. Reading about it, I think it means so much as “concurrence”, the going together of different identities. For instance in my case being a white Dutch male would imply that in my position, all the pro’s and cons of being white, Dutch and male would concur, intersect, and influence my experience of, and position in life and society in a certain way. If lawmakers would want to improve equality in society, they would have to take all these different identities into account because they intersect, and not only make laws that forbid for instance discrimination on the basis of gender or race separately, but consider the interaction between those agenda’s carefully.

      To illustrate this with an example: suppose a country has a law against discrimination based on race (racism) and a separate law against discrimination based on gender (sexism). A company that systematically refuses to give jobs to black women, could argue in court that it is not racist because it is in fact hiring both African American and Caucasian men; nor is it sexist, because it is in fact hiring both (Caucasian) men and women. To prevent this from happening, we need laws that address the intersectionality of discrimination against black women.*

      Although it says so in my passport, I don’t personally identify with either of the separations mentioned there (white, male, Dutch). They are just roles to me, and don’t define who I am. But society will probably, in all of its awkward duality, consider me to be a Dutch, white male nevertheless. Although the Netherlands in recent decades has a good record when it comes to egality under the law, historically these are all subgroups/sections of society that provided their members a preferenced position in life. So I am not likely to run into obstructions because of either of them, nor because of any of their combinations. Having said this, adding CF to the equation slightly differs the outcome. For instance, would I have been born 10 miles further to the east, I would have had the German nationality which, since the first of May 2021, would have given me access to Kaftrio (Trikafta), while now I will have to wait until the Dutch lawmakers allow the reimbursement of this expensive medication, which could take another year. And, again comparing with Germany, for some reason or another, the relative death toll from covid in Germany is by far the lowest in Europe; perhaps because on average they have 5 times the ICU capacity – which boils down to political decisions. One could of course argue that these differences do not sprout from discrimination and therefore have nothing to do with intersectionality, but are merely logistic and temporary – but still they appear to be present and could be solved by law.

      We should however not overestimate the power of the law. The problem of discrimination is not going away with the making of laws alone. Of course, when making laws to this effect, one should have a clear eye for the concurrence of discriminatory factors and try to have a more holistic approach, in which different forms of discrimination and suppression (like sexism, genderism, racism, homophobia and ableism) are dealt with together. This is what professor Kimberlé Crenshaw, who coined the term intersectionality in 1989, intended to achieve (although the term since has gone widely beyond this context and content).

      But even then, history learns there are deeper causes of discrimination than the absence of good laws which, in my opinion, all arise from the separating human mind, who illusory considers itself to be a special person with a separate identity, which it builds from holding on to futile differences based on gender, race, nationality, religion, health etc. With this it tries to set itself apart from the rest of the world and from “other” people, in stead of feeling as a non-separable feature of the whole. As long as we do not address this fundamental flaw in our species’ perspective, laws will at best mitigate some of its dreadful consequences, but never solve the problem itself. Only if this problem is solved from the inside out, it will stop presenting itself. The best way of solving a problem is to stop causing it. No legal or social action could ever do this. This is not a task for society as a whole, nor for the lawmakers or judges, but something each of us can start with right here and now.


      * Or a sound judge who argues that if sexism is forbidden, any racist variant of sexism is also not allowed; and if racism is not allowed, any sexist variant of racism is also forbidden. But judges are not always sound, especially not when they are elected on a political agenda in stead of appointed on the basis of their expertise and qualification only.

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