CW: general cruelty to the non-neurotypical, the poor, and the dark-skinned.
Something happened yesterday that really affected me. A work thing, not an AHCA thing.
I have a client, Ms. K., whose son, N.K., is very bright. He has an incredible knack for working with computers, and he has tested well above grade level in certain areas of academic development.
N.K. also has severe autism, to the point where the majority of what he says is merely echoing phrases other people have said. (When he wants something, he can often use one- or two-word phrases.) N.K. was diagnosed at a fairly early age and has always been in a program in public school where he has significant individual support.
Starting at a young age, N.K. has also presented with various behavioral concerns, concerns that are not unusual for such children. In school, transitioning between activities would often cause N.K. to get frustrated; his typical response would be to bite himself or to kick at others. His elementary school noted these concerns, but no steps appear to have been taken to try to analyze or correct this behavior.
His middle school went a step further; their approach appears to have been to try to ignore the behavior as much as possible, even as the spotty records that exist indicate that N.K.’s behavior would often disrupt class. While I cannot affirmatively reconstruct a narrative based on a handful of school records, this school appears to have merely warehoused N.K., promoting him until he moved on to another school: during his time at this school, his instructional reading levels regressed two grade levels and his instructional math levels dropped one grade level. This is, in some ways, a textbook example of the Supreme Court’s concern, reiterated multiple times over the last 40 years, that too many children are “sitting idly . . . awaiting the time when they [are] old enough to ‘drop out.'”
But this was only one side of what N.K. experienced during middle school. Around the seventh grade, N.K. started growing, and growing prodigiously. At the age of 14, he currently stands roughly six feet tall and 190 pounds, and because Ms. K. has made sure to carefully regulate N.K.’s diet, he appears to the disconnected observer as a fit and otherwise normal-looking Black man of about 20.
Now, behaviors that as a small child might be worrisome but ultimately harmless are a little different when you are significantly larger than you were as a small child. Ms. K. started noticing increased aggression at home around this time, which she found inexplicable because she was not receiving reports of the same from this school.
It took about a year for the emergency room visits to start. Toward the end of his eighth grade year, Ms. K. was having increasing difficulty controlling his outbursts at home and had to resort at times to calling 911 in order to receive help in calming him down. It was at around this time that she also called my office in an attempt to try anything to get N.K. the help he clearly needed.
That was 14 1/2 months ago. After determining that N.K. would almost certainly be a good candidate to be moved into a residential educational program, one where staff could use behavioral science to observe N.K. around the clock and encourage better behavior, he has finally been placed in a program as of this week.
So why the delay? No district employee who came in contact with N.K. or with me in the last year has disagreed that a residential program is appropriate. There were some unexpected delays, sure. But perhaps more than those delays, the problem is that the process is so many steps, each step controlled by a different person, each step which requires the full completion of the previous step and the new person’s full comprehension of the full situation. Literally everything was a bottleneck.
In the meantime, Ms. K. has been afraid for her son. By last fall, she no longer felt that she could take him places unless it was absolutely necessary. As he looked like a fully grown Black man, he would be perceived as a threat by other people on the street, and in multiple instances other people had escalated an accidental bump or a stare from N.K. into a full-on confrontation. For the same reason, she became less and less willing to call 911—after her sixth or seventh such call, the police arrived along with the ambulance and demanded to know if her assailant was armed. (In a cruel twist, most of the emergency room visits with N.K. often included a staff member allowing N.K. to play games on somebody’s phone or tablet in order to help him calm down; N.K. thus started associating emergency room visits with things he enjoyed and started trying to induce Ms. K. to call 911 so that he could play those games, both by taking her phone and by acting out in ways that had made her call previously.)
Indeed, because N.K. is at this point significantly taller and stronger than Ms. K., she has not been living with him at their apartment, but instead staying with friends of hers until they have worn out their welcome, moving from friend to friend as she has been able, so that she would always have a second person to help calm N.K. down during his outbursts.
Ms. K. dropped N.K. off at the residential school this week, along with some food that she knew he liked. After getting home, though, she couldn’t do anything but worry about how he was doing, and she called the school to check on him. (The school requests that parents not visit within the first couple weeks of placement due to the concern that it could interfere with behavioral observations.) The staff member said that he had been handling the transition relatively well so far and that he hadn’t had any significant behavioral issues yet. In the middle of the conversation, N.K. took the phone from the staff member, cheerfully said “hi, mom”, and gave the phone back.
The next morning, she woke up at 6:45 and started submitting résumés to go back to work. (As N.K.’s behavior had deteriorated, she had had to stop working as she was afraid to leave him alone at home or to take him to run errands, meaning that her only window to leave the house to do things like shop for groceries was during the school day.) In her words, she saw returning to work as urgent and imperative because “I know it’s part of what is best” for N.K.
I have turned this over in my head for some time now: what exactly are we supposed to take from the fact that a mother, one who has lawyers dedicated to placing her son in a residential school, one whose contacts with the school district ALSO agree that a residential school is appropriate and that his current classroom setting is inappropriate, still has to watch her son sit idly by for an entire year in that inappropriate classroom setting with teachers not given the tools to properly redirect and improve his behavior while the details get sorted out?
The only conclusion I can draw is that she lives in a society that does not function. The system is visibly and fundamentally broken.
This is not attributable just to current events; the legal framework that led to this outcome is 40 years old, prior to which children like this would be institutionalized wholesale. This is not a bug, but a feature; the lack of support for those who are differently abled in this society was not even considered a moral failing until recently.
This is what we are and what we have to acknowledge.
And what of Ms. K.? What does society owe her? She has, over the past 14 years, done virtually everything in her power to forge forward. With no father in the picture, she has worked as a single mother to provide for N.K., at least until holding a job became impracticable. She had the good fortune of living in a city where legal organizations devoted to special education advocacy for low-income families are plentiful and aggressive in their efforts. She had the good fortune of living in a city where transportation options for people with disabilities existed, even if their efficacy was questionable.
And yet, her journey over the last few years has required more strength from her than I have ever had to contemplate in my life. And even still, in addition to the hundreds of hours I have personally billed on this case as one of several attorneys who have worked on it, Ms. K. used her school days to stay on top of everybody involved in this process, placing hundreds upon hundreds of follow-up calls to the relevant district representatives, medical professionals, and school admissions officers to ensure that N.K. would end up somewhere she could personally feel comfortable with, and end up there as quickly as possible.
But I know people and you know people who think that Ms. K. is not owed a debt by society, but rather has run up a significant bill on it. She has benefited from Medicaid (and New York State analogues); from Social Security (benefits disbursed for N.K.); from Access-a-Ride, which costs roughly 30 times what it recoups in fares (the car service for those with disabilities is the same price as a subway swipe); and now from the NYC Department of Education (which must cover N.K.’s tuition at this residential school).
Ms. K. would never ask me or anybody else to be remunerated or even recognized for the odds she has overcome to do what she has done for N.K. But it is a very American thing to do to marvel at these heartbreaking stories that praise the virtue of strength against all odds.
Here’s the problem, though: strength against all odds necessarily implies that the odds are long, and long odds necessarily imply that for every story like this, there are many, many more stories that end with a parent, a child, a -person-, crushed under the weight of the system.
This is what we are and what we have to acknowledge.
We have to acknowledge, but we do not have to live with it.
We do not have to live with the idea that money is more important than human lives. We do not have to accept the injustices and the ignored suffering that we have grown up with. We do not have to roll our necessary participation in this framework into complicity.
We can, no, we must fight. Not only the half-dozen blind spots in our society raised by Ms. K.’s story, but the power dynamics that cause other blind spots, including my own and yours.
We, as a broken society, have no other option.
This is what we are.
We have to acknowledge.
And we have to fight.