Like many of you, last weekend I was glued to my television. As helicopters flew over my house, because a small downtown less than two miles from me was being looted and burned, I couldn’t help but wonder what can I do? How can I help? And then I remembered a dyslexia meeting I attended last year.
Diversity in Dyslexia
Last summer I was sitting in a conference room in Minneapolis, Minnesota with my 10-year-old son. I was there for a dyslexia meeting and I decided to bring my son with me so we could go to a Twins game the next day.
About half-way through the first presentation, I whispered to my son, “What do you notice about the people in this room?”
He looked around and he said, “They are all women.” I said, yes that it true, but what do you notice about the women?
It took him quite a while to try to come up with the answer I was looking for and when he came up empty, I asked him to look at the color of the room.
How many African-American people did he see? One. There was one African American woman in the room of over 100.
And literally one minute after I said that, that one lady, Clarice, announced: “As the only African-American in this room…” It couldn’t have been better timed.
And even though that one woman has the presence of 100 women, the stark reality was that she is not enough – one person is not adequate representation.
This was a group that was supposed to represent the entire dyslexia community – which includes every ethnicity under the sun.
In fact, every time we (DTI) present we almost always privately comment to each other how little diversity there was at the meeting. This has happened all over the country.
Dyslexia does not consider race or gender, but not every race is represented at dyslexia-related events.
Diversity in Dyslexia Organizations
I have noticed this same under-representation in many dyslexia organizations, including my own. The people held up as dyslexia heroes are almost all white and often privileged.
Because of our experience in the adult literacy world, we noticed early on that this was a problem. Instead of holding billionaires up as our hero, we chose to highlight advocates like Ameer Baraka, who are much more reflective of the experience of dyslexics who go undiagnosed.
His story is not only about diversity, but about the effect that privilege has on the dyslexic experience.
But why are voices like Ameer’s so hard to find? That’s the real question.
We have to figure out why we are not the inclusive community we should be. Maybe it’s because we don’t do our part by creating more diverse movies, more diverse brochures, and more diverse events. What are we doing wrong?
Privilege and Perspective
As I began my research for my new book about adults with dyslexia, I was pleasantly surprised by how many adults reached out to me to participate and talk to me. But as I began to create a spreadsheet with ages, locations and ethnicity it was blatantly clear that if I published a book based on these interviews alone, it would look like dyslexia only affects Caucasians.
And despite my best efforts African-Americans, Latinos and Asians did not reach out to me. So, I had to make the effort to reach them and I was lucky enough to have the same woman I spoke about in the first paragraph connect me with adults in her state so I could include their perspective.
I was also able to visit a prison and interview a few inmates there. What I learned is that I was right, I can’t publish a book or a movie or a documentary without their voices – and not just one or two voices to cover my bases. If I did so, it would be fraudulent.
Their stories need to be heard. Their perspectives need to be heard. Their outcomes can be so different. Their pain can be so much deeper.
It’s made me sit back and be forced to acknowledge my own privilege.
If you feel like you can walk into a school and demand something for your child – you have privilege.
If you feel like you can question the teacher – you have privilege.
If you feel like you can sue the school – you have privilege.
Right now, the dyslexia community is full of privilege and almost devoid of diversity.
Making the Dyslexia Discussion More Diverse
I have always, and I mean always, said that I do what I do in the hopes that it will help the kids who don’t have parent advocates, for whatever reason.
I worked in a library located in southeast San Diego for 12 years with low-literate adults and one thing I know for sure, their experience is often far different than the experiences of the kids we see most often in the current dyslexia movies, videos, and events – including those produced by DTI.
So, what do we do? Acknowledge our shortcomings. Once we have done that, we can look for solutions.
But how? I am not sure, but I am really, really hoping that by writing this I have at least started a conversation.
I am not one that thinks talking things through is enough, in fact, I am not a big talker.
Let’s figure out how to fix it. I am open to suggestions.
In the meantime, take a look at your local dyslexia community – does it really represent your entire community? What does it look like? Who would feel comfortable coming forward? What can you do to make it more inclusive?
Dyslexia is inclusive and we should be too.
Thank you for posting.
Yes, the vast majority of teachers are white, female and middle-class. The literature for the earliest readers is also the same – white, middle-class, and female. Its a problem!
This is such an important conversation! Many of the students that I have that are not white have so many other things that interfere with making reading a priority. Which is a foreign concept for most of us, but when you see Mazlow’s hierarchy broken down in action year after year your heart can’t help but break. The prison system may be the place where we start. It sucks, but when people are in prison they are able to listen and learn a little better than when they are worried about where their next meal is coming from or where they will sleep. When we teach adults that they are not stupid, but that their brains just need to be taught a specific way, then we may be able to reach families that haven’t been receptive before. Too many of the students that I have had who start to make progress are gone to a whole different school before I can even show their guardians how to help them.
My husband and I were discussing this just this week. We say–we have to advocate hard to get help. . We feel we need to hire a lawyer to explain the law so we can make the right requests. I could make advocating a full time job… or I could get the help my child needs outside of the school and that costs money, and sometimes that is not possible. We are white, college educated, my husband has a good job, we are blessed, but this stretches us to the breaking point, emotionally and financially.
We asked ourselves, if 15-20 % of ALL kids have dyslexia- how do they get the help they need? Why do the schools not have programs they provide to help dyslexia? How can a parent find them? What about the ESL student’s parents who don’t speak English or the single working parent who cannot take time off for school meetings? Do they get the help they need? Advocating takes time; if you do not know the law the district can get away with not following it.
And who goes and gets a degree in education to teach? Not the male student who struggled thru school that could actually relate to the student.