#029 What does intellectual disability mean? The R – word and implications

Genia:        Trigger Warning: The R-word.

Genia:        Welcome to the Good Things in Life podcast. I’m your host, Genia Stephen, and today I’m talking about the definition of intellectual disability. And I’m warning you right from the start, I use the R-word. Now, this episode is short, it’s only about 15 minutes and I would really like to hear what you think after you listened to it. And if you think it’s okay, I’d really encourage you to share it if you are in Facebook groups with parents of children with intellectual disabilities, with parents who might be just getting a diagnosis. All right, here we go.

Genia:        Hi. So, I’m here today to talk about a subject that honestly makes me a little bit uncomfortable. What is intellectual disability? I’ve been in a number of Facebook groups over the last several months where parents have said, “My child just got a diagnosis of an intellectual disability. What does that mean?!” And it’s kind of a loaded question. It’s a loaded for a couple of reasons. One, because in the last several many years, decades now, we’ve really struggled with language that can describe intellectual disability in a way that is respectful and acceptable to people who have intellectual disabilities and their loved ones and people concerned with social justice and because what it means is actually subjective in a lot of ways or at least the implications of what it means. I’m a little bit uncomfortable talking about this subject because I really think it’s important that parents understand what intellectual disability means clinically, technically.

Genia:         Like what, when they’re coming to these Facebook groups, they’re asking, “What is this diagnosis?” I don’t understand. I’ve never heard this term before. I don’t, you know, it could be in another language for as much as I understand. And I’m uncomfortable because I’m going to use the r-word so that people understand – intellectual disability means mental retardation or retarded. And mental retardation or retarded using the r-word, whether or not that’s okay or not okay, that is a very valid subject for another time. But I do think it’s important that we are allowed to use language when we’re talking to each other about important issues, when we’re being respectful and profoundly humble about really making sure that people understand so that we can have honest and helpful conversations that are going to help people with disabilities and their families and advocates. So, I looked it up clinically.

Genia:        What does intellectual disability mean? And according to the AAIDD which is the American Association of Intellectual and Developmental Disabilities. So, they say “intellectual disability is a disability characterized by significant limitations both in intellectual functioning, including reasoning, learning and problem solving and in adaptive behavior, which covers a range of everyday social and practical skills.” And this is generally diagnosed before the age of 18. And the reason that that is the case is because intellectual disability is something that you are, it’s just sort of how you’re born. Other people can acquire a similar disability, but that is usually identified with a different diagnosis. Like brain injury for example. Just one example.

Genia:         So, the AAIDD does go on to discuss whether or not intellectual disability is the same as mental retardation. The answer is yes, it is. And then it also goes on to say it’s a little bit different from a developmental disability because that can include many things. For example, like cerebral palsy that might include intellectual disability but doesn’t necessarily. So, that’s the beginning. And then they go on. I kind of think this is funny. So, just bear with me for one second. So, they also go on to talk about the fact that they have the most…, so “AAIDD, the world’s largest and oldest organization of intellectual disability professionals has played a major role in evolving ideas about and approaches to intellectual disabilities. In fact, the association founded in 1876 has published 11 additions of it’s definitional manual between 1908 and 2010.”

Genia:         And each edition contains the latest scientific understanding of the condition. Now, if I was an organization – given the state of services and this state of people’s understanding about intellectual disability or mental retardation and what that should mean in somebody’s life – I’m not sure I’d be bragging about that on my website, but that is perhaps unfair because I don’t know a lot about the organization. But where I want to take this conversation is really what does this mean in a broader sense? What does this mean for the life of your child who’s recently been diagnosed with an intellectual disability? It probably doesn’t mean what you think it means when I say mental retardation or retarded. And that is because people who have an intellectual disability or mental retardation have been extremely and profoundly devalued in our society. That doesn’t mean that they are not valuable.

Genia:         I couldn’t mean anything farther away from that, but that the society has not perceived them as being particularly highly valuable, which I, and many other people argue is why the term retarded became an insult in the first place. Again, conversation for another day. But what’s relevant to this? What does and doesn’t a diagnose of intellectual disability mean to the life of your child? It means that you probably have absorbed some of your, some of the society’s perceptions and feelings about people who have an intellectual disability. And so, you are probably going to need to, or at least benefit from, unpacking some of the crap that our society tells us about people with intellectual disabilities. Here are some things that people think about people with intellectual disability, which are untrue. So, people think that people with intellectual disabilities can’t learn ,that they are not going to be open to or they’re not going to be able to grow and progress, that they are unable to learn how to read and write, that people with intellectual disabilities will inevitably be lonely and have no friends because they are incapable of being friends or making lasting relationships and caring for lasting relationships.

Genia:         None of this is true. And that people with disabilities have no future. People with intellectual disabilities have no future. Now, this is what society says about people with intellectual disabilities and if that’s what society believes and if that’s what parents believe, then it does become a self fulfilling prophecy. And that can be true. But what we’re seeing is that around the world, people with intellectual disabilities are proving to us that they can in fact lead very rich lives full of lots of growth and potential. And here’s where we get back to the aaidd.org definitions and what they are suggesting and promoting. So, that’s great that they have had the most up-to-date scientific definitions ever. But science and medicine have in fact done great harm to people with intellectual disabilities because of the boxing essentially of people’s expectations and the way that they say this is what you can expect.

Genia:        It’s called prognosis and it means what outcome can you expect. Now, if you go into any Facebook group of parents of children with disabilities, and you and ask the question, has your child ever done something that the doctors said that they never would? You are going to get story after story after story. But it is also true that if you have low expectations for your child with an intellectual disability, they will probably fall to those low expectations. So, it’s really important for us to question what we believe to be true about the potential of people with intellectual disabilities. Now here is what it does mean if you have a child or if your child has an intellectual disability. This is what having an intellectual disability means as far as the life of your child. It does mean that life should continue to mean and include all of the same things it did before you knew that your child had an intellectual disability.

Genia:        I cannot stress this enough. Your child didn’t just become an alien and Other, somebody who belongs somewhere else in special places for special people with special services to lead a special life outside of community. As soon as you veer onto that path, life changes dramatically. I’m not suggesting that people with intellectual disabilities or many people with intellectual disabilities won’t require some supports throughout their lives. Maybe a lot of support. My son does. I’m not denying that when I’m saying is that life and the expectations of life and the typical kinds of aspects of life all remain the same unless you choose differently. The other thing related to that is that the good things in life, what constitutes the good things in life does not change because you have an intellectual disability. So the kinds of things like a safe and loving home, people who care about you and opportunity to contribute, to make a contribution to your community, to your family, you know, personal safety, enough food on the table, you know, reasonable health care, those kinds of things.

Genia:        Those are exactly the same for every human being on the planet. There’s actually not a huge variation in a baseline analysis of what the good things in life are. And there’s actually research to back that up. It’s not that we don’t want different things or that we’re not individuals, of course we are. But the good things in life really are pretty well understood across the planet, to mean the same thing. And having an intellectual disability does not mean that the good things in life are different for you than they are for other people, doesn’t mean that. It is also incredibly important because of the history of devaluation and the reality of devaluation in our society that we hold very high expectations for our kids with intellectual disabilities. That they will learn and grow and contribute and have valued social roles in our community and that we expect them to stretch themselves and to become everything, all that they can be.

Genia:        Which I think is a jingle for the army, isn’t it? Anyway, it’s really important. We have these expectations of our children that don’t have intellectual disabilities. You know, that they’re going to grow and they’re going to explore their interests and that they’re going to become a wholesome, full adult. And we need to have the same expectations of our kids with intellectual disabilities. When we have an a kid with an intellectual disability, it means that we need to be extra focused on making sure that their life is rich with experiences. One of the things that limits the potential of children with intellectual disabilities is that they often experience what some people call a deprivation of experience. And what that means is that their lives are really small. They stay at home with family, they go to therapies, they go to appointments, they go to treatments, but they are not at the skate park or the YMCA or the regular classroom.

Genia:        They may, because of their limitations or because of opportunities denied to them, not be able, not have access to or be able to easily get to all of the same kinds of experiences, get to or have the same kinds of experiences as kids without intellectual disabilities. And so as parents, we need to bend over backwards to make sure that they, that those experiences happened because that’s how human beings grow. And so, if we want our kids with intellectual disabilities to have to grow to their full potential and to become contributing citizens, then we need to make sure that they have lots and lots and lots of opportunities and that is going to require some work. Almost inevitably that’s going to require some work, but it is the same stuff of life. The opportunities, the experiences. I’m not talking about super rare enrichment or expensive kinds of things.

Genia:         I’m just talking about making sure that our kids with intellectual disabilities have the same kinds of rich inputs that a full and healthy childhood generally provides to the average child in the average community. So, I really hope that I don’t, that nobody hates me or that I didn’t trigger any hurt or harm by using the term mental retardation. I really, I really hope I didn’t. I really believe that we need to have honest conversations so that parents know what is an intellectual disability and then what does that mean for the life of my child? And we need to be able to talk about it openly and richly and ongoingly. So, if this is a conversation that you would like to contribute to, to be a part of, just to watch, then I would encourage you to go to goodthingsinlife.org.

Genia:        You can go from there, into our Facebook group, sign up for the email list. We regularly are hosting meetings and presentations where you can gather with other parents and have conversations in a really safe and supportive environment. As a parent of a child with an intellectual disability, you really are the gatekeeper and the advocate, which is likely to make the biggest difference in your child’s life. And while that might feel like an overwhelming responsibility and perhaps not one that you ever saw yourself filling, this is something that you can do. This is doable and Good Things in Life is there to help. Thanks!

Genia:         All right, so there you go. I’m really curious what do you think? Is there ever a time when using the r-word in order to clearly communicate with somebody who really does have a need to know and a need to understand is okay? Is it ever okay? I think it is. I mean I want to move towards a world where all language use is experienced as respectful and dignified by all people all the time and it’s simultaneously well understood. But in the meantime I think that we need to be open to having respectful, humble conversations with parents in ways that they can understand using words they understand. And also then leading that important conversation into a more important conversation about the framing of disability itself. What people are taught to believe about the potential of people with disabilities? And what really the implications of intellectual disability are for child raising, for parenting and for the potential of the child with the intellectual disability.

Genia:        Now, I cannot be the only person listening to this who is in Facebook groups with parents who have not had anybody just lay it out on the line for them who are seeking information and who want to understand, who want to support their kids. So, listen, if you are in some of those Facebook groups and if you think that I’ve covered this in a way that is both clear and understandable and respectful and just… acceptable, I guess I’d strongly encourage you to share it. Now this podcast recording is going to be launched on the Good Things in Life Facebook page as a video recording. And so, you can go to the Good Things in Life Facebook page, which you can find in Facebook or you can go to goodthingsinlife.org and on the homepage there’s a link to the Facebook page. And then you can share that video into pages or, onto pages or into groups or on your own Facebook timeline if you think that it would be helpful to other people. And whether you think it’s helpful or unhelpful, I really want to hear about how you think we should have these conversations with people. Let’s talk about it. Leave a comment on Facebook or in the comments section in the show notes at goodthingsinlife.org/029. I hope you have an excellent week.