IDD, Dismantling Oppression, & Why This Takes All of Us

I am a researcher at Duke. I am currently working on several research projects that are taking up a lot of my bandwidth.

You may have noticed I have been posting a bit less here. I have had to put myself in “monk mode” and focus on these projects. For me, this means removing as many distractions as possible. Even when I am resting, I find myself needing things to be quieter and more simple as well.

I am doing work that both inspires me but also makes me feel like I have poured out all that I have by the end of the day. I sometimes wonder if I could “work smarter”. What if I could “work so smart” that I:

wouldn’t run out of energy.
could get even more things done
could get these things done faster
could do all the things!
could say “yes” to all the invitations, the opportunities… the distractions.

You know…because I would have so much more time and bandwidth.

Just writing this makes me laugh.

I know this is the elusive myth I have chased much of my life - “maybe, just maybe I can find a way to do it all”.

This is 100% a myth. And no doubt, come this Monday morning, I will once again have to fight this thought. As a researcher, I can confidently say with 100% certainty this tempting thought… to do more and to do so more efficiently will enter my mind.

But I am getting quicker at recognizing it. It is sneaky but classic and it is certainly as familiar as an old friend by now.

We cannot do it all.

We can not be all things to all people and there are seasons where we have to be about less things so we can be about the best things.

Some work is exhausting. This is just what these projects take. And they are worth the effort.

But at all times, it is important for us to be known. And it is life giving to share the parts of us that we care so deeply about.

But it is one thing to know it and another to remain committed to the practice.

For example, it is sometimes hard for me to know how best to share my research and clinical work. I sometimes wonder if people will understand. Can I share it in a way that will make sense to all readers? Can I help them see that it is relevant to them… and help them see that if it is not immediately relevant to them or someone they love, that it most likely will be in the future.

But, if I’m completely honest I am even more concerned people will not care. And unfortunately this is not unfounded as this has been the experience of people with intellectual and developmental disabilities (IDD) -

In case you don’t know what the term intellectual and developmental disabilities (IDD) means , it is a term that includes a group of conditions that happen during the developmental period (before the age of 22 years), usually last throughout a person's life, and cause impairment in physical, learning, language, or behavior. This umbrella term of IDD includes autism, Down syndrome, cerebral palsy, intellectual disability, and many other conditions.

Many people with IDD have often felt unseen, forgotten, or misunderstood. As a community, people with IDD have not routinely received the support they need to to live their lives fully accepted and included in their local community. People with IDD are still 100% experiencing oppression defined as the state of being subject to unjust treatment or control. There is so much I could say about this and many examples of this… this is largely what my research and clinical practice is about.

People with IDD deserve to live their life with the support they need to live lives on their own terms and with as much independence as possible. While some people with IDD in some places are beginning to experience schools, health care, and communities that fully include them, understand their needs, and engage them and their strengths… This is all too rare.

But to know me, and understand how I spend many of my waking hours I want to share about my commitment to improving the health and well-being of people with intellectual and developmental disabilities (IDD) and their families. One way I do this is by:

Partnering with people with IDD to improve the clinical care people with IDD receive and to co-develop research that people with IDD identify as important for them and their community.
Develop interventions including for educational components so that health care providers can provide excellent care to people with IDD.

I was recently in the recording studio at UNC recording videos that will be shared with primary care providers throughout North Carolina. So below I am sharing the script I wrote and recorded for the video on The Culture of IDD and its Impact on Psychiatric Care and that I read in the studio at UNC’s The Friday Center. I have included a few pictures my colleagues snapped in the studio that day.

Some of my Duke and UNC colleagues that made this recording possible - March 2023.

As we started the studio work, I only half-jokingly said:

“My goal is to
1) not sound like a robot as I read this
2) dismantle oppression.

This recording is one small way to illuminate the stigma and discrimination people with IDD and their families experience and invest in a better future. And sometimes it feels like trying to empty the ocean one thimble at a time. But I will not give up and you will continue to hear my commitment to the IDD community.

So keep in mind, as I wrote these words, they are for primary care doctors, nurse practitioners, physician assistants and other healthcare team members. But I hope you will see that this content is important for us all in order to be better neighbors, family members, advocates, and humans.

Also, if you want to learn more about the urgent needs of people with IDD in North Carolina, I encourage you to watch the new film funded by the North Carolina Council on Developmental Disabilities (NCCDD) Unmet: North Carolina’s Two Developmental Disability Crisis. You can find more details about this 25-minute movie here. This film captures the real-life experiences of people with IDD and what it looks like when their needs are unmet. Brian Dooley, chair of the NCCDD, who’s expertise I mentioned in my script below is also featured in this film. I can tell you more about why this matters… but Unmet will show you.

I hope what I shared above and the script below gives you a better understanding of the hurdles people with IDD experience, the ways we can work to dismantle oppression, and that it will take all of us. As you read the script below I encourage you to think about what jumps out at you. What aspect makes you pause and consider. How does this connect to your personal experience? How can you use your voice and influence to amplify the voice of people with IDD so we can effectively partner with them to dismantle the oppression they are experiencing because, as I explain below, “Nothing About Us Without Us.”

The Culture of IDD and its Impact on Psychiatric Care

By Michelle Scotton Franklin, PhD, APRN

1. What do you think is important for people to know about the culture of IDD?

There are several important factors we need to consider about the culture of IDD to help improve psychiatric care for people with IDD and to address the stigma and discrimination this community continues to experience.
First, as we work individuals with IDD, we need to be mindful of their multiple social identities and the different ways they are experiencing oppression so we can help dismantle this oppression.
As a society we are culturally diverse and made up of many different groups with different interests, skills, talents, and needs. The same is true for the IDD community.
People with IDD can be marginalized based on these different social identities including their
Race
Ethnicity
Gender
Sexual orientation
Religion and
Disability
At the individual level it is important to recognize and understand the different social groups each person with IDD belongs to and the ways they need to be supported to reach their optimal functioning.
Secondly, as a group, the IDD community has and continues to experience great stigma and discrimination based on their differences which can include
physical disability
sensory differences
and
intellectual disability
Though not everyone with IDD has intellectual disability, people with intellectual disability are often even more stigmatized than people with other types of IDD or disabilities.
Language is one way people experience stigma and discrimination, so it is important to remember our language matters.
In 2010, President Barak Obama signed Rosa’s Law which changed “mental retardation” to “intellectual disability” in US federal law. This law was a key milestone to promoting inclusive, people-first language.
Despite this, we still hear the term “mental retardation” used in society and in the medical setting. We need to remember that this language is offensive and ensure we do not use it. We also need to speak up when others use this and other offensive terms.
Lastly, even within the mental health system, people with IDD and their families frequently hear that providers do not have experience with IDD and therefore will not serve them in their clinic. This not only lengthens waiting times, but it also makes people feel forgotten or not understood.

2. What is person-first and identity-first language?

Whether to use person-first language or identity-first language is a debate that continues within the IDD community.
Person-first language emphasizes the person before the disability. An example of this would be saying a “person with IDD” or a “person with autism”.
Some people prefer this language as they believe this emphasizes the humanity of the person. They believe this recognizes them as a person instead of a condition. This is a common preference of parents of people with IDD.
In contrast, identity-first language puts the disability first in the description. An example of this would be saying “disabled” or “autistic.”
In the autism community, many self-advocates prefer the terminology “autistic,” or “autistic individual" because they understand autism as a fundamental part of an individual's identity.
There are pros and cons to each type of language. But, as a provider in the clinical setting, it is best to ask each person which language they prefer and use that when referring to them.

3. What does a strengths-based therapeutic approach with people with IDD mean?

A strengths-based therapeutic approach with people with IDD means focusing on their strengths and resources rather than their problems or deficits.
The medical model perspective suggests that developmental disabilities should be “cured”, and symptoms eliminated.
However, a strengths-based approach means we recognize features of disability are natural differences and that having IDD gives people unique strengths that are an important part of their identity.
We want to do a thorough assessment so we can understand the person's mental and physical health issues as well as the person's functional strengths, resources, desires, and support needs. Then we can develop a treatment plan with the patient that is person-centered and recognizes the person as an expert on their own life and goals.

4. What does self-advocacy mean and why is it important?

The term self-advocacy means speaking up for oneself and one’s interest.
And the civil rights movement for people with IDD is called the Self-Advocacy Movement.
So, in the IDD community a self-advocate is someone with IDD that is speaking up for their needs and rights as an individual and for the IDD community.
It is critical that we honor the IDD community’s slogan “Nothing about Us without Us”. This means we ensure they have control over their lives and are partners in the decisions and efforts that impact them. They must have a seat at the table.
As clinicians and researchers, it is important to include self-advocates and their voices in our work.
For example, my team and I at Duke are committed to doing research with self-advocates so we are doing research with the IDD community not on the IDD community. This ensures we do work that is important for the IDD community and that it is done in a way that honors their needs and preferences.
I encourage you to learn from and amplify the voices of self-advocates. We have many great self-advocates who are leading change in North Carolina.
For example, my friend and colleague Bryan Dooley is the chair of the North Carolina Council on Developmental Disabilities. You can learn by following him on social media.
I also encourage you to get involved with the NC Council on Developmental Disabilities and other self-advocacy organizations in your community.
Self-advocates are our best teachers on how to improve psychiatric care for the IDD community.

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