Individuals with intellectual and developmental disabilities (IDD) are well aware of the hurt and anguish caused by society’s need to label and categorize. The stigma caused by the term “mental retardation” and its derivatives has spurred the outstanding “Spread The Word To End The Word” campaign started by the Special Olympics and Best Buddies programs.
However, have we in the IDD field unintentionally created our own stereotypes of individuals with disabilities by labeling them or diminished their accomplishments by adding a label unique to the field? Take, for instance, the term “self-advocate.”
What is the difference between advocate and “self” advocate? In other areas of society, people who work tirelessly for equal access and fairness are labeled as fighters, activists or simply, advocates. Cesar Chavez is described as a civil rights activist, Martin Luther King, Jr. as a freedom fighter, and Susan B. Anthony as an advocate for change. While they all benefited in some degree from their activism, their efforts improved the lives of many in society.
Why do we resist recognizing significant leaders in the field of IDD who themselves have disabilities in the same way we honor activists in other fields? The addition of the term “self” diminishes much of the outstanding accomplishments people with disabilities have achieved such as expansion of Home and Community-Based Supports, improved access to public education, and more aggressive enforcement of the Americans with Disabilities Act, to name but a few.
Does it also not color our expectations of people with disabilities and the expectation that they need to take an active role in determining what type of life they wish to live? By choosing where they live, what type of job they wish to pursue or what to study they are engaging in self-advocacy. These are action and decisions which impact their life and their life only. These are activities that should be expected of everyone.
However, when that same individual testifies in public hearings, visits with their elected officials to influence public policy or writes to their local paper to demand equal access, does that not better all members of society? These are acts that benefit “self” and all people with disabilities and should not be marginalized by one more label.
Do you view advocates and “self” advocates differently? Does the term “self” unintentionally diminish the efforts and credibility of people with IDD who are working tirelessly to improve the lives of all people with disabilities?
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Filed under: Innovation, Public Policy Tagged: | Advocacy, advocate, Developmental Disability, Disability, intellectual disability, Public Policy
Great post. This morning, out of curiosity, I re-read the book, “Cindy Bentley: Spirit of a Champion” (and yes, it’s a very short book). I found it interesting that, for all her accomplishments as an acknowledged spokesperson (including meetings with two US presidents), her current position at People First, and serving on two boards of directors for disability groups, the words “self-advocate” are not mentioned a single time in the book. She would be the first to tell you that “self” is a poor description of the focus of her efforts.
Cindy Bentley: Spirit of a Champion (Badger Biographies Series)
My friends in People First would agree wholeheartedly with your post. We often talk about this issue. The term self-advocate seems to me to be just another in a long list of examples of the very paternalistic view and attitude this society has of those who experience disability. I think much of the language we use in this field has the same tone. Dignity and respect are sorely lacking.
I like the post. Being a recent college grad (BSEd Cross Categorical Special Education – CD emphasis) we used the term self-advocacy in the school system to define teaching students how to speak up for their needs in all settings (home, school and community). Self-advocacy training and education are just coming to the forefront in schools in our area and align with transition goals and objectives for students with disabilities. However, the term does not necessarily fit the population we serve for the simple fact that the support workers, case managers, nurses, guardians do a lot more of the advocating for our individuals needs. As we all work tirelessly to shift the focus of our individuals from a once institutionalized setting to inclusive settings and the community (group home) we need to address teaching self advocacy in its true sense of the word to the people we support, and the staff who support them. While we all realize that self advocacy teaching may not be possible for our individuals to understand, we certainly know that they can participate to the fullest extent in the learning process, and it is up to the persons who support them to carry out the advocacy.
I agree that dignity and respect lacking for individuals in special populations but it is up to us to teach others (in the home, school and community) so that people are informed about persons with disabilities and work to shift their thinking from disability to ABILITY.
I think that we teach people how to “self-advocate” but they “advocate for themselves” when they call their elected official about an issue that concerns them. I also think Disability Rights leaders are activists but the disability community would love to be recognized among the likes of other activist movement leaders. Other movements don’t always connect that social justice and civil rights are terms that apply equally to disability rights. Can you imagine how strong a movement could be if all civil rights and social justice advocates would band together across racial, cultural, poverty, religious, minority, LGBTQQ other disenfranchised populations in other initiatives and lend support and power to each other? Can you imagine the power that disability-specific groups could have if banded together to promote disability rights for all people with disabilities? Within disability, this has been greatly improving through the past couple decades, and we’re looking forward to even more cohesion in the future. The more, the better – the more inclusive and supportive we can be of each other, the stronger we can be regarding advocacy initiatives and in promoting positive social change!
Wow! Very thought-inspiring post.
My experience with self-advocates is that most take great pride in the “self” portion of their adopted title/label/moniker. People with disabilities, and especially those with intellectual disabilities, have for more than a century been if not the most, then the most uniquely disenfranchised group in America. Locked up and “institutionalized” without any say in the matter, denied education and barred from meaningful work, they were (and often still are) intentionally shuffled as far out of sight and mind as the rest of society could push them. Is it any wonder that when they claimed their voice at last, they saw their actions as distinctive from other advocacy movements and leaders?
It might very well be time for the word “self” to divorce itself from “advocate,” but shouldn’t that be the decision of the advocates themselves? They have found their voice. If they carry their own banner in pride, shouldn’t they also determine what that banner says?
Self-advocate is a silly term in most contexts because most people, with or without disabilities, advocate for themselves. The only place it makes sense to call anyone a self-advocate is when they are representing their own interests in a situation that you would expect someone else to represent them.