Why are parents so angry?
In their book, Allison C. Carey, Pamela Block, and Richard K. Scotch set out to explain the deep fractures in the disability community. BUY IT HERE
I recommend reading this book for context and understanding that these conflicts aren’t new and likely not going away anytime soon. Asking people to simply get along masks the dehumanization disabled people have endured at the hands of families and medical practitioners, and overly simplifies the capitalistic and ableist society in which people who largely want families to bear the brunt of making their child conform, constructed.
I will do a separate post about why disabled people are so angry (especially developmentally disabled people who have lifelong disabilities they were born with, as opposed to people who acquired their disabilities later in life).
In our state of Washington, and in other states as well, we have a long history of family voices being respected and prioritized over the voices of their disabled children and family members. That is easy to forget because when we got the legislature to ask for funding, accountability, responsive caregiver trainings, etc., we feel powerless.
In fact, we are powerless. We lose a lot of the time.
We’re told our asks are too expensive. Too cumbersome.
Families are told we need to cut deals with unions, water down our needs, and fund our own services.
Families experience a lot of gaslighting. We have DSHS administration telling legislators that there’s plenty of services but nobody is using them. They fail to explain to the legislators that the services being offered are not the ones families and disabled people want or need. That fact is held against families, rather than furthering their arguments with legislators.
Parents, mainly mothers, are expected to spend the entirety of their child’s school age years “fighting” for special education supports for their child. This expectation is silent as to how the mother is supposed to also feed her child if she’s single or god forbid, has other children. The fighting for services that many people believe are readily available and even over requested is nothing short of a full time job. Not only do you have to ask for them, you have to collect your own data to show that the services aren’t working or aren’t happening. Nobody appreciates the absurdity of asking parents, mainly mothers, of doing this with non-speaking children.
After our youth with developmental disabilities graduate high school, the conversation shifts to adulthood. From supported decision making and guardianship, to supported living (which is supposed to provide a host of services it doesn’t) to day programming for adults who cannot work (which for people with developmental disabilities is most of them), parents and families are at the cross hairs of being told their needs are too expensive and their imaginations and expectations for their children aren too limited. Parents are routinely pelted with conflicting impossible stated and unstated expectations for how to support their disabled children.
In the 2025 legislative session, parents of young children with developmental disabilities asked the legislature to allow parents to be their children’s paid caregivers, as is already allowed for parents of adults over the age of 18. Young parents, who largely cannot work and cannot rely on schools to educate or care for their children, are implicitly and explicitly told to drop out of the paid workforce to care for their child without compensation. If we can find a caregiver, they may be compensated. But parents of minors may not.
Families endured all sorts of offensive messages from disability advocacy organizations and legislators alike. We heard ableist and antiquated rhetoric like, “parents shouldn’t be paid to change their children’s diapers.” And my personal favorite, “schools aren’t daycares. You can’t expect schools to care for kids with disabilities.” The last message represents the collective belief that we condone the culling of disabled children from society, and the absent care replaced with disdain for their families who are left financially and emotionally impoverished as a result.
Parents and families also asked for day programming for their adult children because most people are bored at home, on the couch, with nothing to do and nowhere to go. Families are told that it’s their fault. They should be dreaming up full and meaningful lives for their children and fully supporting them to live those lives. Families talk about visiting their children in their supported living homes and the brand-new chairs are quickly worn in because their adult child is parked in front of a TV all day. Quizzically, I’ve heard parents is blamed for this fate as well. Parents were told that if only they raised their expectations for their disabled child that magically, their child would no longer be disabled and could in fact work a full time 40 hour per week job and support themselves! Never mind that’s not true for many non-disabled people who do not rely on extensive supports to access their communities.
Given these realities, it smarts when people tell me that families have too much power.
And yet, I must concede the truth in the matter asserted. Compared to adults with developmental disabilities, parents do have a lot of power. Allies and Obstacles discusses how historically, that power has been ceded to medical professionals who have advised institutionalization and “forgetting” their child exists. I unpack this more in my Why Are Self Advocates So Angry (From The Perspective of A Privileged Parent)? There are many contemporary examples of this happening as well. But it is hard to remember the power and privilege we hold in one space, when we are so powerless and ignored in other spaces.
