Saturday, May 20, 2017

What the Fidget Spinners Fad Reveals About Disability Discrimination

Aiyana Bailin

Photo © Robert Couse-Baker / Creative Commons
[image: Hand holding a spinning fidget]
I'm angry about the sudden popularity of fidget spinners, but probably not for the reasons you think. I'm not mad that they're disruptive in class, or obnoxiously trendy. I'm furious because of what they reveal about societal power structures, and the pathologizing of disabled people by non-disabled persons.

Autistic people (and others with developmental disabilities) have been fighting a war for decades. It's a war against being forcibly, often brutally, conditioned to behave more like neurotypicals, no matter the cost to our own comfort, safety, and sanity. And those of us who need to stim in order to concentrate (usually by performing small, repetitive behaviors like, oh I don't know, spinning something) have endured decades of "Quiet Hands" protocols, of being sent to the principal's office for fidgeting, of being told "put that down/stop that and pay attention!," when we are in fact doing the very thing that allows us to pay attention instead of being horribly distracted by a million other discomforts such as buzzing lights and scratchy clothing. We've had our hands slapped and our comfort objects confiscated. We've been made to sit on our hands. We've been tied down. Yes, disabled children get restrained—physically restrained—in classrooms and therapy sessions and many other settings, for doing something that has now become a massive fad.

Think about this: Decades of emotional punishment, physical violence, and other abuses. And then some guy (who just happens to be in a position with more social clout than most disabled people will ever attain) writes an article about how having a fidget toy helps him concentrate during meetings, and all of a sudden, every neurotypical person in America is falling all over themselves to get a fidget toy of their own. The first time I heard about the fidget spinner craze on the news, I wasn't sure whether to laugh or cry. But I was leaning toward "cry," for the reasons I just explained, and because the irony made me feel ill. Sometimes the universe has a cruel sense of humor.

This is important. Really important, so read this next sentence twice: Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people. This should make you stop and think, especially if you are someone who works with, educates, or researches people with diagnoses like autism.

What else might we de-pathologize overnight once the "right" people, the "normal" people, the "healthy" people start doing it? Will somebody write a tweet that makes it socially acceptable to avoid eye contact? Will a Facebook meme make it suddenly trendy to have texture sensitivities? Will hand-flapping become cool after it shows up in a music video?

Normality is an illusion. It doesn't exist. Human culture is constantly changing, and our everyday behaviors are changing with it, more than ever in the fast-paced digital age (yeah, I'm old enough to remember when phones couldn't go everywhere with you, and believe me, social norms were very different back then). Even if "normal" did exist, setting it as the goal towards which disabled people should strive is unacceptable.

Because insisting that disabled people act more like non-disabled people is not about improving functionality, it's about who has the power to set social standards. It's the same reason certain accents and dialects are considered less "educated" and the people who speak that way snubbed. It's the same reason people with one skin tone are portrayed as less capable, or more dangerous, than people with the majority's skin tone. It's​ why "women's work" is devalued and underpaid. In short, it's oppression, plain and simple.

Perhaps I should be more hopeful. Perhaps we're moving towards an era of acceptance. Even before the fidget spinner hit the spotlight, more and more professionals have agreed that sensory needs are real, and should be acknowledged and met. Many websites now sell chewy toys, app stores abound with sensory relaxation apps, and plenty of autism "treatment" programs (though certainly not all) have moved away from their prior focus on sitting still with immobilized hands while grudgingly accepted that stimming is actually a perfectly healthy thing for autistic people to do.

But the power structure is still there. There's still a rigid hierarchy of who gets to decide which behaviors are normal or pathological. There's still a societal subtext that tells people who are different "be less like yourself and more like us." We need to work on that.

Wednesday, May 10, 2017

Why Supported Decision Making Is a Better Choice Than Conservatorship

Family hugs

Image © Falashad | Creative Commons
  [image: Smiling white woman with crown braids
hugging a person with an auburn ponytail.]
Many families or guardians assume that when high-support autistic teenagers transition to adulthood, they automatically need to be legally conserved for their own protection. But that's isn't necessarily true. We spoke with UCSF's Dr. Clarissa Kripke about why Supported Decision Making can be a better choice than pursuing conservatorship, and the many reasons why.


Dr. Clarissa Kripke: When people with disabilities and their families start to think about transitioning from child to adult services, they are often encouraged to consider conservatorship. 

Conservatorship is a legal process where a court appoints an individual or organization to make decisions for an adult. Courts do this after finding that the adult is unable to provide for his or her own needs for health, food, clothing, or shelter. They must be found unable even with supports, and there must be no less restrictive option available. The court can grant a limited conservatorship to make some decisions, or a full conservatorship to make nearly all decisions. 

Fortunately, there is a less restrictive option, called Supported Decision Making which is less expensive, less burdensome to families, more flexible, and which promotes development, opportunity, and safety.

Thinking Person's Guide to Autism: When it comes to conservatorship, what are some of the main misunderstandings you've observed?

Kripke: Some families fear that they will not be able to continue to provide support, or to be involved with their children’s educational planning, health care, or service planning, unless they are named conservators. Schools often encourage families to include conservatorship as part of transition planning, mistakenly informing parents that without conservatorship they will not be able to participate in their child’s Individual Education Plan meeting. 

This is untrue. Under the Lanterman Act, parents or other authorized representatives are involved as much as their disabled children want and need them to be. A Supported Health Care Decision Making agreement can clarify roles and assure that confidential information can be shared within a circle of support, and that supporters can attend appointments and meetings.

Families often feel that conservatorship will increase their loved one’s safety. However, the best way to ensure safety is to teach and empower a person with disabilities to direct their own life. When people can communicate directly about their preferences they are more likely to end up in a good situation and with people they trust.

Some parents and professionals believe that conservatorships are necessary for people with cognitive disabilities and recommend them routinely as part of transition planning. However, even people with the most profound disabilities can retain their legal capacity, even if they cannot independently meet the legal standard for informed consent for some or all medical decisions. The United Nations Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life. It obliges states to provide access to support for people with disabilities to exercise their legal capacity.

TPGA: What do the rights of a person who has been conserved look like? 

Kripke: Imagine what your life would be like if, when you reached the age of 18, your parents decided everything about your life—where you live, what you eat, what health care you receive, where you spend your money, and how you spend your day, and with whom? What if a judge said they could make those decisions without consulting you, not just for a few years, but forever? What if people called your parents instead of you about important decisions in your life? Imagine what would happen as your parents got older and a judge handed that power over your life to a stranger who you didn’t get to choose? We do this to people with disabilities when we conserve them.

Fortunately, in California, most regional center clients, even those who have very little expressive communication skills, are unconserved. Regional center clients are entitled to support such as transportation, assistive technology, education, and personal assistance. They still receive health care, disability payments, communication help, services and supports, and participate in their individual program planning to the extent that they are able with the support of family, friends, significant others, service coordinators, clinicians, payees, the client rights advocate, and other service providers. With Supported Decision Making, you can get the support you need to direct your own life.

TPGA: It appears that opting for supported decision making instead of conservatorship gives an individual the highest likelihood of having a strong circle of support. Can you talk about why this is?

Kripke: With Supported Decision Making, you can make agreements with as many people as you wish. For example, many of us would ask a different person for help understanding our finances than we would for understanding our health. Also, many people want different types of support from different people. One person may provide transportation and physical assistance while another provides support for communication.

TPGA: What are some of the benefits of supported decision making for the individual, in terms of growth and learning as an adult?

Kripke: When people are given opportunities to make decisions, they develop skills and learn from mistakes. When people are engaged in the decision-making process and given communication supports, they are more likely to engage. Supported Decision Making gives people with disabilities the opportunity to make choices for themselves. Sometimes this involves taking some risks and taking responsibility for the consequences. This is how we all learn and grow.

TPGA: What are some of the long-term benefits for supported decision making for the family? It seems as though parents' ability to serve as conservators may become more challenging as everyone ages.

Kripke: The people who will provide your child services and supports decades from now, may not have been born yet. People who you have in mind to take over your role may be unwilling or unable to do so by the time they are called to serve. Parents are not the people who will decide who succeeds them as conservator. A judge will. And a judge can remove a parent at any time if they do not like the way they make decisions. They can also compel a conservator to continue to serve even if the conservator moves out of state, or if serving becomes difficult. Parents often develop their own health problems and are less available to provide support over time. Without permission from a judge, nobody else can step in to share the responsibility. This also means that potential successors don’t have an opportunity to learn about your child and their role before they are named conservator.

Supported Decision Making is much more flexible. It keeps the person with a disability in charge of choosing who provides them support and the type of support they want. This typically changes as they age, and as their relationships and circumstances evolve. People can serve for long or short periods of time or share responsibility. Supporters can be friends or family or paid professionals.

TPGA: Do parents in the U.S. have to make a legal decision about their child's future, in terms of conservatorship or supported decision making, by the time the child is 18 years old?

Kripke: No. Just like everybody else, people with disabilities learn and grow—sometimes dramatically. Augmentative and alternative communication (AAC) is an emerging field, and many people who were not able to express themselves in the past are now able to do so. Sometimes new technologies or adaptive equipment can increase people’s skills. 

Supported Decision Making takes into account the fact that capacity fluctuates over time and in different environments and with the type of support they receive. Not only can people with disabilities improve their skills at making decisions and expressing themselves, supporters can improve their skills in learning how to listen.

Currently, only two states have adopted supported decision-making into their legal capacity statutes: Texas and Delaware. It’s important that we see more states adopt Supported Decision Making laws – while supported decision making agreements don’t require legislation in order to be implemented, they are more likely to be respected by banks, clinicians and other entities when they are placed into statute.

TPGA: What if an individual develop skills that afford them more independence after they have been conserved? Can the conservatorship be reversed?

Kripke: Courts evaluate a person at a particular moment in their live without regard to whether the person might develop new skills or their circumstances might change, but their rulings continue indefinitely. Conservatorships are very hard to undo once they are put in place, and it rarely happens. Once someone is conserved, their agency is often overlooked, which has life-long consequences. 

There is no rush. While conservatorships are rarely reversed, a limited conservatorship can be pursued at any time in the future if a need arises that can’t be managed any other way. If someone is already conserved, conservators can still respect will and preference and implement supported decision making principles.

In addition to being very challenging to reverse, there is no guarantee that a conservatorship will transfer as a parent may wish after their death. While a plan may be put in place to set a sibling or other relative as a conservator after the initial one dies, the court has the ultimate decision-making authority: opening up the possibility for people to be placed under professional conservators, who may have dozens of clients and are not actively engaged in a person’s life. This can lead to institutionalization and neglect.

TPGA: What are good resources for families who need guidance about ensuring individuals' rights are protected and respected as they transition into adulthood?

My favorite video about Supported Decision Making is Gabby’s Story. Susan Mizner, Disabilities Counsel from American Civil Liberties Union recently discussed Supported Decision Making (video). ACLU has a helpful Frequently Asked Questions Fact Sheet. To learn more about supported decision-making models around the world, check out the Autistic Self Advocacy Network’s resource The Right To Make Choices. The Office of Developmental Primary Care has videos, training materials, and links to additional resources on its Supported Decision Making page.


To improve health outcomes for people with developmental disabilities, you can make a tax deductible donation to support the Office of Developmental Primary Care.


Dr. Clarissa Kripke, M.D., FAAFP is Clinical Professor of Family and Community Medicine at the University of California, San Francisco. She is Director of the Office of Developmental Primary Care, and of CART Services, an interdisciplinary, mobile, health care consultation team serving Regional Center clients in Northern California. Our team is deeply committed to supporting people with developmental disabilities to be as healthy as possible. We know that, with access to the right supports and services, even people with the most complex needs can live successfully in the community of their choice.