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I woke up the other night at 2 in the morning, that kind of “awake” that meant getting back to sleep would be pretty much impossible. My head was clear, thoughts racing, heart pounding. And it was all about my daughter, Moxie.
I had woken up completely fixed on the future: what then.
“She only has 8 more years of school!” I thought with some horror, my mind immediately flicking to the fact that our local community college does not have a program for students with intellectual disabilities. “Will we need to move to the mainland for her to go to college?” And then I thought about my own current counseling program, and how I could probably take my counseling practice online to go with her to the mainland so she could go to college there. And we could rent out our house so provide for some income to rent something over there? But what about her brothers? And on and on it went.
This is the thing: it is a reality that there are few college programs for people with intellectual disabilities. It’s also a reality that jobs for people with intellectual disability tend to revolve around the “four f’s”:
The Four F’s of Disability Employment:
Employment for people with intellectual disabilities has been limited to the “four f’s”:
- “food,” i.e. food preparation and service
- “filth” i.e. cleaning and janitorial service
- “flowers” i.e. simple landscaping or decoration, and
- “factories” i.e. light assembly work.
Even in my town here in Hawaii, that’s what the jobs for people with intellectual disabilities revolve around. The ARC here even maintains a strong janitorial contract and there is literally a flower business that employs people with intellectual disabilities.
All of that is fine in the sense that all work is noble and we all have our dharma to follow. But what if your dharma does not lie in the path of the “four f’s” and everyone thinks it does because you have an intellectual disability? You know? What then?
My daughter has Down syndrome.
She likes – and (by any standard) is really good at – yoga, boogie boarding, celebrating birthdays, makeup application and fashion. She also really likes reading, music, dance, and learning.
Like all people, she deserves to have the opportunity to learn to her heart’s content and to further her interests and skills and figure out what her actual path in life should be. No-one should be pushed onto a path by dint of the fact that they have an intellectual disability and others around them (- be it systems or supports) are not thinking beyond those “four f’s”.
What Do We As Parents DO?
We Help in Any Way We Can
I’ve seen it happen time and again: if the person with the intellectual disability really wants to do something beyond the “Four F’s” and if the parent is able, the parent helps in starting a business that is in more in line with the person’s passion.
From cookie businesses to design companies, I’m pretty sure parents have helped to create the full gamut of businesses with their loved one with an intellectual disability, because the opportunity to work in that particular field simply did not exist. Or, they go into the family business, like Jessica Parson did with her yoga classes. And, of course, support for higher ed (read all the fantastic stories on Ruby’s Rainbow).
What About Right Here and Now?
So, there are these great examples and stories out there, but I want to loop it back to where I am, right here and now: I’m a single mom in a small community in Hawaii. I don’t have a lot of financial resources. What can I do to calm myself down when I wake up at 2 in the morning with fears for my daughter’s future? What can I do to help make sure she has options that make sense for her, and she won’t get looped into the “Four F’s” because she has an intellectual disability?
I know what I did the day after I had that insomniac fear-spell: I reached out to Moxie’s best friend’s mom (her best friend also has Down syndrome). I knew she would understand, and sure enough, she did. Out for a walk that day, I met a new friend with Down syndrome and her parents, and said, ‘wow, what a coincidence, I had the roughest night last night’ and told them about it, and sure enough, they understood too.
We all understand.
I have a hunch that’s where my answer in taking the Four F’s out of the immediate equation for our children is: lean in, reach out, and build connections within the Down syndrome community itself.
We can change the automatic Four F career trajectory if we work together and utilize the power of one another. Yes, there is definite action that needs to be taken – like, I see advocacy at the Community College being necessary. I also see other things, like a refusal to let our kids be herded into segregated classes, and an equal refusal to label on the “special.” Our kids do not have “special needs,” they have human needs.
Culture needs to be taken into consideration in our work as well.
Here in Hawaii, we literally live on small islands and there is a real fear of burning bridges by standing up for and to certain things. There are also deep cultural threads of respect and politeness. I think this is similar in any small community, and I know that if plans are created that don’t incorporate ways of staying polite and addressing the discomfort of going against the grain, then the plans are not likely to work in the long term.
The other thing I am reminding myself of is that one step forward, consistently made, can literally take a person almost anywhere.
The key is consistency, the key is forward motion.
So, even if I (single mother, 3 kids, working graduate student, limited financial resources, etc) am not able to make leaps forward right now, simple steps forward may take us exactly where we need to be in 8 years.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.