Elizabeth the Gatekeeper

A chapter from Roshani Shay Curtis’ newly-published book, Two Souls, Tandem Journeys: Our Adventures with Love, Deafness and Autism

Great works are performed not by strength,
but by perseverance.”
– Samuel Johnson

Elizabeth is as imperious and formidable as her namesake, the queen of olden England. She is tall, larger than life, big-boned, smiling pleasantly on the surface, and gracious in demeanor. But behind that you can feel her watching and listening alertly, judging you ‘from on high’ in every moment. She stands over me and Matt as she talks, asserting herself with a strong voice and apparently immovable posture.

Behind the physical, there is yet another level, where she is relishing her power. Yes, deep in her soul I imagine she thoroughly enjoys the control she has over people as the gatekeeper. She can choose which children and parents have access to her system of county mental retardation and developmental disability (MR/DD) services and those who ‘do not deserve them’.

I can see at once that Matt and I won’t get through her gate. We don’t fit her criteria. I am too intelligent, too professional, too middle class; not needy enough, not begging or obsequious or confused or awed enough. Matt is too withdrawn and too old and too big; not smiling or cute or endearing enough. We have come to her too late.

We have struggled on our own all these years, never asking for social service assistance of any kind, even when I was single and we lived on a mere $2,000 a year. Who knew that later we would discover that if Matt is ever to have a job of his own, a residence of his own, a life of his own independent from me, we must enter the maze of offices and people who make up government social services? We never have even enrolled Matt for social security disability benefits. I felt those small sums available should go to the neediest and most disabled, an attitude not unlike that later displayed by Elizabeth, come to think of it.

But in the past, we were doing just fine, thank you. Besides, my own low-income family had always been too proud ever to take ‘charity’, government or private. That value of making it on my own is embedded deep inside of me. But we learn that there is no way that we can gain access to information about or aid in finding appropriate work or housing for Matt until he has been ruled by Social Security to be truly disabled and accepted by the County into the MR/DD system.

It is such a joke, really. Anyone in the room with Matt for five minutes recognizes the severity of his disabilities. But Social Security requires reams of paperwork, several interviews, a doctor’s examination (the records from his childhood and the School for the Deaf are not enough), and months of time to decide that he is disabled and entitled to a check each month that we never wanted in the first place. And later there are annual reports and periodic reviews and requests to produce new doctor’s reports as if autism and deafness are afflictions that are subject to spontaneous remission.

But we do all of this so we can have the right to even meet Elizabeth and sit in her county office and try to enlist her help in finding Matt suitable work and housing to nurture his independence. ‘First, become totally dependent, and then we will help you gain independence’, seems to be the message. It’s so Alice in Wonderland. Sometimes you just have to laugh in the middle of it all merely to hang onto your sanity.

But, of course, you never laugh in front of a person like Elizabeth. She has the power. If you fit her ideas of what a parent and child with disabilities should be like, and if she warms to you, she will become your patron, like her namesake queen was wont to do so long ago. If not, you are out of luck, because she is the gatekeeper. She decides if you are eligible to belong in the MR/DD system and once in, where you are on the ‘wait list’ for services, because, of course, there is never enough to go around.

So, I fill out her applications too – always so much paper posing impossible questions that even perfect historical records give me no chance of answering accurately. And this, mind you, is my impression, me, the person who loves working with paper! How do less well-educated, less paper-friendly parents cope?

But then, such parents need the likes of Elizabeth to be their saviors and steer them through the system. This is the role she relishes, that makes her feel good, feel superior because she is all-knowing by comparison. Again, my own childhood conditioning appears: my reverse snob mother, who despised the rich and superior-acting people of the world, gave me antennae that stand to attention whenever such a one comes into my orbit. I catch another of my own prejudices.

Back to Elizabeth who understands how the system works; she can save the lost, and find services for them and their children. I wonder if she began as a heartful woman. Caring? Just wanting to help those less fortunate? It must be true. In her heart, she must see herself as a hero. I have heard that she has adopted more than one developmentally disabled child to raise as her own. But her role as savior, as the hero has somehow been infused with a full-blown case of the petty bureaucrat’s disease, which I call ‘puffed-up-with-power-it-is’. How big our egos can grow, much bigger than our hearts! Not that I am immune, mind you.

Well, the upshot is that Elizabeth accepts our paperwork and indeed decides that Matt does not belong in the MR/DD system. She even refuses to refer us to the experts at Fairview, the state institution for the developmentally disabled, for another opinion. I hear one day from another parent that she has said that I do not love Matt; that I only want to get rid of him. If that were true, would it not be imperative to save him from my clutches? I might even accept that view if it were to lead to a job and housing for my son. But she doesn’t see it that way. I almost wish she did. She is also overheard saying that Matt will only have access to MR/DD services over her dead body.

Quite a bit later the state legislature passes a law that says explicitly that autism as a label fits the category of labels called MR/DD. Elizabeth is forced to accept Matt into the system. She reluctantly does so. Then one day I go to her and ask, “Where is Matt on the waiting list for services? When is his number likely to come up? How long before he has access to a job or a residential placement?” She says she can’t say, but it will certainly be years. “Waiting times average 8–10 years,” she says. I ask to see the list, to see where Matt is situated. She acts shocked that a parent would ask such a thing and refuses to produce it. I have this strong suspicion that the list only exists in Elizabeth’s head. I am sure that those who come to the top are only those in crisis or those who come into her particular favor.

There are gatekeepers like Elizabeth everywhere in the bureaucratic world that governs disability services. How can running into them ever result in anything positive? Well, as much as I (obviously) dislike the situation, I learn a lot from Elizabeth. I learn to be persistent. I learn not to go away, not to accept ‘No’ for an answer. I learn that sometimes you must be creative about how you get through the gate. I learn, tragically for a while, that dramatic crises get attention where polite and logical arguments do not. I learn that even gatekeepers have superiors who are sometimes open-eared and open-hearted and willing to help.

Yes, all turns out well in the end, in spite of Elizabeth, but not before Matt and I live through our worst nightmare. Before that, however, we have a brief brush with utopia.

Two Souls, Tandem Journeys
Our Adventures with Love, Deafness and Autism
Roshani Shay Curtis, Ph.D.
Austin-Macauley Publishers, New Yoek, 10 November 2023
174 pages
Paperback, hardback, ebook
austinmacauley.com – barnesandnoble.com – mightyape.co.nz
amazon.com* – amazon.co.uk* – amazon.de* – amazon.in or in your country

Two Souls, Tandem Journeys: Our Adventures with Love, Deafness and Autism – A review by Chintan.”This is a story which will enrage, frighten, and at the end leave you cheering. I loved this book.”
Two Souls, Tandem Journeys – An introduction by Roshani Shay Curtis of her newly-lauched book about her life with son Tarun
The Rajneeshpuram Experiment: Utopia Found and Lost – A chapter excerpted from Roshani’s book, Two Souls. “I can almost hear him thinking, ‘People around here really like me. Wow.’”