Recently, the San Francisco board of supervisors (including progressives Mar and Ronan) voted to implement an aggressive measure to impose conservatorship on people who access emergency mental health services often. (Read more about that here.) Groups like Senior and Disability Action and the Coalition on Homelessness opposed the measure, advocating for the rights of people with mental illness to have access to voluntary services before they are in crisis rather than being conserved for ending up in crisis. After the rules committee members spoke in committee against the measure, when it came to a vote for the full board, only Walton voted no. Hillary Ronan and Gordan Mar, two "progressives" didn't speak against it and voted yes under the mayor's pressure.
I first learned about conservatorship as my brother reached 18 years old and registered to vote and for the selective service, as required of him by law. I learned of it in sentences like "He is his OWN guardian," spoken by my parents again and again as my brother signed legal documents for himself. Now, when I accompany my brother to appointments, often a receptionist will ask me to sign, and I repeat similar sentences as my brother reaches for the pen. Perhaps this is why my brother, unlike most adults, loves doing paperwork. It is a time where just by signing his name he gets to assert his rights and give a casual "F--- You" to the ableism that assumes he can't make his own decisions because of his down syndrome.
My brother has an intellectual disability, which means there are some things that he has a hard time understanding. But, there's plenty of things he does understand, and meanwhile he's way above average at reading people's emotions and telling hilarious jokes with perfect timing.
I, too, have a hard time understanding some things - such as medical or legal information. I know that on important things like this, it is important for me to ask for help from a trusted person that I know that can help me, and so I do. Sometimes I get more than one opinion before making a decision, and I weigh how much I trust the person giving advice heavily as I decide.
My brother does the same thing.
One thing about growing up with a brother with down syndrome is that you get to know lots of people with intellectual disabilities. As I think through my childhood friends, it's easy for me to imagine them most doing the same thing, too.
So why do so many of them have a guardian?
Some people argue that someone might take advantage of them. Yeah, that's true. But, I got news for you, that happens to the rest of us too... and I'm thinking about some big scale scams, like all those predatory loan scams I witnessed during the foreclosure crisis. People without any intellectual disability had the right to make their own decisions to sign terrible loan documents and lost their homes, and their family's generational wealth - but there, we blame the scammers and the big banks for their manipulation and greed, rather than blame the people who were taken advantage of or suggest that these victims should lose their citizenship because they got scammed. People with intellectual disabilities should have the same rights, even if they, too, make mistakes just like we do.
Many of my fellow siblings of people with developmental or intellectual disabilities are guardians - or will someday be the guardians - of their disabled sibling. I urge you to think about how your own internalized ableism is contributing to you continuing in this pattern, and how being in this role then furthers that internalized ableism.
There are people who should be conserved, who should have a guardian, but I think they are very few. I believe that people with mental illness and developmental/intellectual disabilities have the same rights as all of us - and I stand horrified that the SF board of supervisors passed such a dehumanizing policy, and stand most horrified that so-called progressives like Ronan and Mar voted for it.
I’m concerned about the $20 Million proposed cut from the State Councils on Developmental Disabilities, the $38 Million proposed cut from family caregiver services, and the $8 Million proposed cut from the already dreadfully underfunded Independent Living. More than $100 million in cuts have been proposed from a range of disability services in this budget, but everyone is talking about Special Olympics.
My family has never supported Special Olympics, and my brother has never participated. I remember as a small child learning that Special Olympics, like Special Schools, were a form of segregation, of Separate and NOT Equal, for people with disabilities. By creating a separate athletic program for disabled children, the mainstream athletic programs didn’t have to be equipped to meet the needs of children requiring accessibility accommodations.
And clearly it isn't so simple. I know lots of people who have participated in Special Olympics and had wonderful experiences as athletes. And, there are other disability athletic programs out there that allow people with disabilities to have their own space for athletic pursuits, free from ableism from others, and that's awesome. But, it is true that we should at the very least give a critical look at Special Olympics.
Special Olympics plays directly into the trope of inspirational disability porn – the many, many stories, usually told in video format, that show how an individual with disabilities overcomes great obstacles to achieve something (often something fairly normal), with the goal of making non-disabled people feel inspired by them, and carrying the underlying message of supporting a “pull yourself up by your bootstraps” mentality. There are dozens of Special Olympics inspirational videos every year, and they get shared by people who haven’t even thought about how they can create greater accessibility in their communities to allow people with disabilities to fully participate in life. We can be “inspired” by such videos while simultaneously othering the people featured in those videos, assuming they will be in a separate space, and not considering including them in our lives.
Yes, people with disabilities should have access to physical fitness programs that value their strengths, allow them to pursue the goals, and feel seen for their accomplishments. But, SO SHOULD EVERYONE ELSE. This isn’t a “special” need – it is the same need we all have. So why not create athletic program opportunities for everyone to participate in, and make sure they meet the needs of people with disabilities? That would undo some ableism and transform the culture of physical fitness spaces, making them more welcoming for everyone.
There’s a great video about ending the use of the word “Special” for people with disabilities. I recommend you watch it. And, I’ll add to it, that as the little sister of someone who was constantly called “special,” I felt like I could never be special enough to be seen. And, I’d also add that now folks say things like, “Well that’s special” in a way that they used to use the R-word – changing the word doesn’t change the ableism. Let’s address the ableism and create accessibility for everyone.
So, there’s a lot of cuts I’m concerned about. And if you want to stand in solidarity with people with disabilities, I suggest you care about some of those cuts, and not just keep highlighting Special Olympics. You can learn more in the Sibling Leadership Network’s March 2019 policy news here.
I was asked to write about my experience with the Coaching for Transformation certification program through Leadership that Works in Los Angeles, CA - and this is the letter I wrote to coaches interested in enrolling in the program:
I have a whole shelf dresser drawer filled with old journals, thousands of pages I’ve written for myself over the years of my life. Some of them pre-date my learning to write in cursive, and others date from when I gave up on having a cursive that even I could read and went back to printing. The early volumes reflect an earlier stage in my development, and my written words over time show growth in who I am, what I think, and how I act. I’ve written many words about finding my voice – but perhaps it isn’t something to find and something that develops, just as the voice writing all those pages has developed. It is in this spirit that I begin and dedicate this blog – may we together develop and grow through these words, and may sharing of words allow us a space to transform each other.
Please note: Because I believe in never reading the comments, I have deactivated the comments feature of this blog. However, I welcome your thoughts and words in the form of an email through the contact form – and it is my intention to engage thoughtfully in any such dialogues and use any feedback for growth and development leading to new content. Thank you for any of the ways you choose to engage – I’m grateful for your listening.