Wrestling with a Difficult Topic
John: I want to change our topic for this discussion.
Maggie: We’re not going to talk about the history of astronomy?
John: We will get back to it. But today I want talk about genetic diversity.
Maggie: You know it’s hard for me to discuss this.
John: I know, and I don’t want to talk about it if you are too uncomfortable. But it is important. We need to tell others about genetic diversity and the discrimination that still occurs today. We need to sound it from the rooftops so others will hear.
Maggie: I agree, but it’s really hard.
John: Can you explain to me why it’s so difficult to talk about it?
Maggie: Sure. I guess. But give me a minute to think about it.
John: Let me know whenever you are ready.
Maggie: (Pausing, and after a big sigh…)
There are lots of reasons, but mostly it’s because it’s humiliating when others find out. I know I am different, but I don’t want others to know.
John: How come?
Maggie: (After another long pause and with tears filling her eyes…)
I just want to have friends. You know, friends who like me for me. I just want to belong to something as me, not as the kid with 22q.
John: And that can’t happen if people know?
Maggie: (With a tear slowly creasing down her left cheekbone…)
No… No. People treat me differently when they find out. It’s more like I’m a project, someone to hang out with because they think I need help. They want to act like a big brother or sister.
John: And not a bon ami.
Maggie: Right. Not like a good friend. Don’t get me wrong, I really appreciate any friendship people show me. It’s better than being ignored, like usually happens with genetically diverse kids. But sometimes I wish people liked me just for who I am. No, no, no, that’s wrong. I always hope people like me just for me.
(With a sob escaping her breath…)
I get lonely sometimes, really lonely. I just want to have friends, even just one real friend. Is that too much to ask for? Really, why is it so hard?
John: (Placing a hand on her arm…)
I am so sorry. I know this dredges up bad feelings. How about if we change the subject back to astronomy?
Maggie: No… This is fine. It’s important, like you said. You’ll just have to put up with me. I can’t seem to keep my feelings down right now. They just keep rushing up.
John: I am glad you are emotional. I am getting emotional too. This is a subject that we all should feel strongly about.
Maggie: (After a deep breath…)
Okay, I think I am getting it back together. Sorry about that. What now? How do we start?
Defining Genetic Diversity
John: First, I think we need to define genetic diversity. Most people do not even know what this phrase means.
Maggie: I know. It’s a new concept that some old philosopher came up with. But it is a good concept.
John: Hey, hey, hey… “Old?” It’s called aging with grace!
But we are off track. Do you want to take a shot at providing a definition?
Maggie: Sure. Genetic diversity refers to people who have genetic differences like 22q2.11 deletion syndrome and Down syndrome, and people on the autism spectrum. There are a whole bunch of other syndromes that fit in here also.
John: That is a wonderful definition.
Maggie: Well, I think about this, a lot!
John: And I like the fact that you didn’t use the word “disorder.”
Maggie: I don’t like that word because it has a bunch of negative stuff that comes with it. It makes it sound like there is something wrong or bad about people like me. I hate that.
John: I also like that you are using bold language right now. And you have a right to hate it. That is why we now use the word differences, and people with these differences are referred to as genetically diverse.
Maggie: I am sometimes asked why it matters what words we use. Some people think we’re just repackaging the differences to make them sound better?
John: Yes, that is exactly what we are doing! But we do it for very good reasons. Words are powerful and they have the ability to affect the way we view ourselves and the way the world views us. So when we refer to people by certain categories, we need to choose words that provide accurate descriptions, based on science and not our prejudices. We need words that are helpful and positive, not negative and with bad connotations.
Maggie: What about “sticks and stones will break your bones but words will never hurt you.”
John: That is so stupid and exactly wrong! It should go like this: “sticks and stones will break your bones but words will crush your spirit, which is even worse.”
Let me ask you this, if you were told on a regular basis that you had a “disorder,” what would you start to think?
Maggie: I don’t know. Embarrassed, humiliated, scared. Like there was something wrong with me. It would freak me out a little bit.
John: Right, and that would eventually wear you down and affect your self-image.
Maggie: Yeah it would. It already does.
John: But what if I told you that you were simply different from others, and that everyone is different in some way. Look around you. Some people are smart and some are not so smart, some have red hair and some have no hair, some are athletic and some can’t walk down the street without tripping, some are male and some are female, some are LGBTQ+, and some are extroverted while others are introverted. Again, just look around. Everything about us is different from others. And whether those differences are based on our genetic code or our upbringing or something else, they are just differences that make us unique people.
Maggie: I like that. It makes me feel good about being different. Or at least not so left out.
John: You should feel good. You bring to this world something that others don’t have, that is your combination of characteristics. And that is a good thing. There are a lot of variations among people, and I want to live in a world that recognizes and values these differences. Can you imagine how boring the world would be if everyone was the same.
Maggie: I agree, that’d be horrible. But I do have things wrong with me, and we have to admit that if we are being honest.
John: I agree. You have some serious challenges in your life. And I don’t think we should minimize those challenges. But we should not, with a heavy emphasis on “not,” use those challenges as a way to define you as a person, or even see them as negative characteristics. They are simply challenges to be overcome, and we all have challenges in some form or another.
And remember, you also have some positive traits, also like everyone else.
Maggie: I get it. Everyone has good points and everyone has challenges.
John: Right. And we should emphasize our positive traits while at the same time striving to overcome our difficulties with hard work, perseverance, and good habits.
Maggie: I am getting a little confused here. Why do we even need to categorize people? Why can’t we just be individuals?
John: That is certainly the ideal that we all should strive for, but some categories are actually necessary.
Maggie: But why?
John: Well let me give you an example that is particularly relevant to our discussion. In order to understand you and understand why you have heart problems, it was helpful to know that you had 22q. In other words, by putting you in that category, we are better able to assist your doctors and teachers in understanding you and what you need to succeed in life. Does that make sense?
Maggie: Yes, I guess. Some categories are necessary because they can help us help others. Help us understand others. Right?
John: You are so smart!
John: I think we now have a good understanding of what it means to say genetic diversity and of the people who are genetically diverse. What do you think?
Maggie: I think our definition works for now.
John: Agreed. We may need to work on it some more if the discussion carries us beyond the definition, but let’s leave it alone until then.
Maggie: Works for me.
John: It is such a pleasure having these conversations with you. I can’t believe how much you have grown over the past few years that we have been chatting.
Maggie: You know those sorts of comments embarrass me.
John: All right. But sometimes it is good to hear things that embarrass us.
Maggie: (Changing the subject…)
So now that we have defined genetic diversity, what’s next?
Giving Credit Where Credit Is Due
John: I was reading Simone de Beauvoir several months ago…
Maggie: The French philosopher?
Maggie: What were you reading?
John: The book that made her famous: The Second Sex.
Maggie: I haven’t read it, but I heard that is a great book. Wait a minute, I think I heard that from you!
John: It’ll blow your hair back. It was a game-changer in philosophy and in the fight for gender equality.
Maggie: Okay, I am buying it on Amazon today. But let’s go on. You were saying you were reading de Beauvoir.
John: And her ideas got me thinking about the history of the discrimination that genetically diverse people have had to endure. She has the language that we need to describe it.
Maggie: So we are going to adopt her ideas?
John: We are going to use some of her language and concepts. But we are going to apply them in a different context. In doing that, I want to make sure we give her the credit she is due. Does that make sense?
Maggie: Yeah, I think so.
The First Paradigm of Discrimination
John: As I was thinking about this, I realized that there are identifiable historical trends in the patterns of discrimination against genetically diverse persons.
I am not really happy with the phrase “historical trends” here, but I don’t know what else to call them.
Maggie: Maybe we can borrow from the women’s movement and use a word similar to “waves?”
John: Do you mean something like the waves of feminism?
Maggie: Exactly. We just discussed this in history last week, and something like that might work here.
John: That is such a great idea. But instead of waves, what do you think of the phrase “phases of discrimination?”
Maggie: Not a big fan.
John: Yeah, it is rather clinical. Any other ideas?
Maggie: You used a word a few weeks ago that referred to phases in science called paradigms. And the major changes to scientific ideas were called paradigm shifts. Do you remember?
John: Of course. And I am glad that you remember.
Maggie: How about using that term here? It’s a cool word.
John: I like it too. Let’s do that; let’s use the word paradigms to discuss the different trends or phases of discrimination.
Most of us are familiar with the first paradigm of discrimination against genetically diverse persons, which involved the bad old days.
Maggie: Oh yes. I have some experience with this, so can I talk about it?
John: Of course.
Maggie: It wasn’t that long ago that people with 22q or Down syndrome were shut up in hospitals or hidden from the public by their families. We were called all sorts of names and were considered defective in one way or another. We were “less than.”
Less than! That was the lesson we were taught every single day, even by the people who loved us. We couldn’t get jobs, we were bussed to “special” schools, and we were considered an embarrassment to our families and communities. Even the churches treated us like objects of pity, feeling sorry for our parents for not having “normal” kids. If I had to listen to one more prayer request for my mom because she had to deal with a freak like me I was going to explode!
John: You are not a freak, so please don’t talk about yourself that way. Don’t let people who participate in this first paradigm define you. That is their shortcoming, their prejudice, their evil. Not yours. And it is exactly what we are trying to move past here.
Maggie: I know, I know. It just really gets to me sometimes. It makes me feel bad.
John: I get that. And I think you should continue to share that pain so that others can see what their language does to people.
But also, you have given us a great description of the first paradigm of discrimination. What a wonderful way to describe it.
Maggie: I have been thinking about this for a long time.
The Creation of Otherness
John: Let me add one thought to this. You used the phrase “less than” to describe how you felt. That is such an effective way to describe it. But we can also use the term “other.”
Discriminatory treatment creates a sense of otherness in the group at which the treatment is directed. And that otherness is not meant to be a positive distinction, it is just like you said. The “othering” is meant to create a sense of “less than.”
Maggie: I think I need a little bit more here to understand what you are saying.
John: Yeah, there was a little too much philosophy mumbo-jumbo in there. Let me try again.
When I treat someone poorly, I am saying to that person “you are not as good as me. You are less than me. You are not a part of my group, my tribe, my clique.” I am in fact telling that person that she is an “other.” Part of “an-other” collective unit.
This applies to anyone we treat poorly or differently from others, which is why we should treat everyone just like we want to be treated. But it is especially egregious when we treat everyone in a group differently.
When we single out a group for specific discriminatory treatment, even if the discrimination is culturally accepted by the majority of people at the time, we are saying to that group that everyone in that collective unit is not a part of us. They are something different, by which we mean not as good as us. Everyone in that group is an “other.”
Maggie: That makes perfect sense to me.
But do you want to know what’s worse?
Maggie: This first paradigm is still going on today, at least in some places.
John: That doesn’t surprise me, but can you give me some examples?
Maggie: Sure, I have many personal examples. I used to attend a private Lutheran school where the principal asked—while standing in the hallway where other kids could hear—“Why has my school become a dumping ground for those types of kids?” I couldn’t believe it. He made me an other!
And when I was at a public school I heard my math teacher say “I don’t have time to teach her. I have regular kids to teach.” “Regular” kids! What am I? Oh yeah, that’s right, I’m an other!
You know what, you’re right. Simone de Beauvoir’s language is perfect to help describe this!
John: Geez, your stories are horrible! I am so sorry.
Maggie: I didn’t exactly feel good when I heard those things. And now I know what you mean when you talk about being an “other.” A “less than.” That was just how I felt.
John: Yeah, I suppose you do have first hand experience. Which makes me rather sad.
Maggie: Enough of that, no more pity party. Let’s move on.
The Second Paradigm of Discrimination
John: That brings us to the second paradigm of discrimination.
Maggie: Okay. Do things get better or worse here? Because I can’t imagine things getting worse.
John: Better, I think. And this is the paradigm we are in right now.
Maggie: Okay. Can I guess what it looks like?
John: Sure. Why don’t you give it a try.
Maggie: This is where genetically diverse kids (well, all ages) are accepted, but only because we have differences.
Oh shoot, I guess I really don’t know how to explain it. Can you help me?
John: Tell me what you think of this idea, whether you agree or not. This second paradigm is where genetically diverse individuals are accepted, but not for who they are themselves. They are accepted to promote the good of those doing the accepting.
Maggie: Um… I am sort of getting it, but it is still not clear.
John: Let me see if I can give you a good example, but from a different context.
It wasn’t that long ago when women were by and large underrepresented in the partner ranks at law firms around the country. This slowly began to change in the latter part of the twentieth century, and while there is still work to do, there are now more women partners than ever before. But when it first started to change, law firms would hold up their female partners for the business community to see as a marketing tool. It was as if they were saying “Look at us, ‘we’ are great because we promote women.” Certainly, promoting women to partner was the right thing to do. But instrumentalizing female partners to assist male partners with marketing is still discrimination.
Maggie: What does “instrumentalizing” mean?
John: It means using someone else for your own good, to use someone as a tool or an instrument to promote yourself.
Maggie: That makes sense.
John: So, in the second paradigm, those individuals who were previously subject to first paradigm discrimination are now accepted, but not all of them and chiefly in an instrumentalized fashion. These individuals are still an “other,” but an accepted other so that they can be used to promote the good of the groups doing the instrumentalization.
Does this make any sense?
Maggie: Yes, very much so. But let me give you an example to see if I actually understand.
I have a friend with Down syndrome. I was really proud when she was voted to be queen at the prom. I really was proud, and happy. And you should have seen her, she was so happy that she was finally being accepted as part of a group. But then the school used her story to show just how good the school was for the community. She was like a poster for the school, not because they loved her for her, but because she made them look good. I am really happy that she had such a good experience, but again, it just makes all of us an other. We are not prom queens because we deserve to be prom queens or because we are just part of the group, we are held up so others can say “look at me.”
John: That perfectly illustrates my point.
Maggie: Don’t get me wrong, I was so happy for her. But I was a little mad at the same time. Why couldn’t she just have her wonderful day? Why did the administration have to use her, pointing out that she was a prom-queen-with-Down-syndrome?
John: I get it. In this second paradigm, those who were previously discriminated against are held out to the public as accepted, but for the good of those doing the accepting.
Maggie: Do you think this is a good paradigm, or a bad paradigm?
John: I would say it is better than the first paradigm, and it is a stage that societies generally go through when they are learning to set aside their prejudices and accept a group that was previously discriminated against.
Maggie: I agree, and it beats being shuttled to a “special” school. But it still feels like settling for second best.
John: It is. That’s true. But we are making some progress.
Maggie: What’s the third paradigm?
The Third Paradigm of Discrimination
John: We could probably identify three or four more different paradigms, depending on how we parse out this problem. But for now, it is good enough to stick with three.
This last paradigm is where we eventually want to be. People who were previously discriminated against are finally accepted for who they are: unique and wonderful people. In this paradigm, law firms will hire employees with 22q simply because these individuals are good employees. Software companies will hire employees on the spectrum, simply because they are good employees. Schools will start admitting genetically diverse students and assisting them, just as they do athletes and musicians. And others can fill in the rest of the examples.
The point is, we will stop characterizing people based on their genetic code and start focusing on their individual traits.
Maggie: Does that ever really happen?
John: In some cultures, with some groups.
Maggie: But we have a long way to go to get there.
John: Yeah, I am afraid so. But we have to do something to push our way forward, and this conversation will hopefully help.
Maggie: Is there anything else we can do to help bring in the third paradigm?
Working Towards a Solution
John: Why don’t you think about your own future and suggest some solutions?
I got nothing.
John: How do you want to be treated?
Maggie: I wish people were nice to me, instead of focusing on my health or my looks or my challenges. We all have things we need to work on, so why are my issues a cause for such intense focus.
John: Well my friend, that pretty much sums it up. The second someone says genetic diversity, teachers and schools and employers and politicians and priests and pastors and most others jump straight to their biases and prejudices. That needs to stop. Everyone is an individual, with individual strengths and weaknesses. It makes me crazy!
Like we said earlier, we can use categories to help us understand some things about people, such as the different genetic categories we are talking about. But these categories should only assist us in understanding individuals. They don’t define the individuals, who also have many other and different characteristics.
Maggie: Do you have anything else?
Everyone needs opportunities in life. And we can usher in the third paradigm much more quickly if we can get businesses to change their biased views of genetically diverse employees.
Maggie: Yes, yes, yes! Think about what would happen if the governor or attorney general of this state decided to start hiring genetically diverse interns. We would get the training we need to help us find jobs.
Oh, shoot. Sorry, I stole your idea. But I got excited.
John: No worries. Why don’t you continue?
Maggie: What if Bill Gates did that? Or Richard Branson (I want to visit his island, by the way)? Or the Google people, I don’t know their names?
John: I agree that things would change much more quickly if these political and business leaders started the processes. But think about this also. What if the local bakery hired just one genetically diverse employee? And the local church? And the local restaurant? And the local theater? And the local law firm? And the local medical clinic or vet clinic or engineering firm or whatever?
Maggie: Things would change very quickly.
John: So you see, we need to sound our “barbaric YAWP” from the rooftops of the world, and make our message known.
Maggie: Goofy, but inspiring. I agree.
John: Well, Walt Whitman is a hero of mine.
Maggie: As everyone already knows!
John: Anything else you want to say?
Maggie: Genetically diverse kids (and all ages) are people just like any other people, with strengths and weaknesses. We just want to have friends and family that love us, and jobs to provide for our needs. That’s not asking much. So let’s make it happen.
John: I am happy you are in my life.
Maggie: Again with the embarrassing stuff!