When I Grow Up: A Social Security Story

When I grow up
I will be tall enough to reach the branches
that I need to reach to climb the trees
you get to climb when you’re grown up.

And when I grow up
I will be smart enough to answer all
the questions that you need to know
the answers to before you’re grown up.

And when I grow up
I will eat sweets every day
on the way to work and I
will go to bed late every night!

And I will wake up
when the sun comes up and I
will watch cartoons until my eyes go square

and I won’t care ’cause I’ll be all grown up!
When I grow up!
When I grow up, when I grow up
(When I grow up)
I will be strong enough to carry all
the heavy things you have to haul
around with you when you’re a grown-up!
And when I grow up, when I grow up
(When I grow up)
I will be brave enough to fight the creatures
that you have to fight beneath the bed
each night to be a grown-up!
And when I grow up
(When I grow up)
I will have treats every day.
And I’ll play with things that mum pretends
that mums don’t think are fun.
And I will wake up
when the sun comes up and I
will spend all day just lying in the sun
and I won’t burn ’cause I’ll be all grown-up!
When I grow up!


If you ask a small child what they want to be when they grow up, once they’ve gotten past the stage of wanting to be a cat or a dog, they will inevitably answer ‘a firefighter’ ‘a doctor’ ‘a truck driver’ ‘a princess’ or something along those lines.  As they get older, their dreams become more distinct, more realistic: ‘a marine biologist’ ‘a veterinarian’ ‘a lawyer’ ‘an artist’ ‘an elementary school teacher.’

I could ask a thousand children this question and although I might get a few confused looks, a few ‘I don’t knows’ and, inevitably, a few kids still convinced that they could grow up to be a fairy or cat, not one of them will ever say, ‘I want to be disabled’ because, well, being disabled isn’t a thing to be.  Even school age children know that in order to be a ‘real’ adult, you have to work and bring home a paycheck.  You have to support yourself.  That is, after all, the whole point of growing up: to become a contributing member of society.

When I was four or five, I wanted to be a doctor.  Then I found out how much school they needed and nope, off the table.  When I was in high school, I was determined to be a middle-school social studies teacher.  In college, I took all the right courses to become one, only to fail utterly at my internships because it turns out that passion for a subject couldn’t make up for the fact that my social skills were not up to being a teacher.  Around this time, as my identity as a disabled person came into being, I tried another internship at a disability rights organization.  I loved it.  I thought ‘I found my people!’ and knew right then that I was going to be a disability rights activist.

Which, over a dozen years later, it turns out that I am.  Too bad it never occurred to me that I couldn’t make a living doing it.

I remember, very clearly, being told that I needed to save money as a teenager, and that I needed to protect my savings, because by the time I was an adult, social security wasn’t going to be around.  They would run out of money, and I would need to support myself in my old age.  It didn’t occur to anyone then that I would possibly need social security before then.  After all, I was a bright, ambitious person with great references and internships behind me – who wouldn’t want to hire me?

As it turns out………every single place I’ve ever applied to.

I’ve said it before and I will say it again. The fact is that the majority of hiring decisions are made within the first few minutes of meeting someone based on their nonverbal cues and charisma. (https://theundercoverrecruiter.com/infographic-how-interviewers-know-when-hire-you-90-seconds/) I don’t have that.  Knowledge, yes.  Skills, yes.  Ability to care, yes.  Executive functioning……I can work around.  But charisma?  That is a shibboleth that I cannot manifest.

And so it was that last spring I started to apply for social security. Even then, I thought that it wouldn’t be for the long-term.  I had heard of several jobs in the area that I was sure I’d be perfect for.  As I did (okay, let’s be honest here, my mom did 99% of it) the paperwork, I thought, well, it will be nice to have for a few months to tide me over, but I’m sure that this job or that one will work out.  It really sounds perfect for me.  I really could do this.

But I couldn’t.  I didn’t qualify for my dream jobs.  I did qualify for social security. 

Not a lot, and the details of it I will keep private, but it is enough to live on if I’m very, very careful.  Which I am, because if nothing else, this process has taught me that you cannot be too careful.  You cannot be too cautious.  Hopes and dreams are fragile things, easily broken by a sudden gust of wind.  The problem is that when you’ve assumed for over thirty years that you would grow up to be a contributing, working member of society and now you find out that……..well………you won’t be, the realization cracks you like a piece of glass hit by a hammer. I grew up with the American idea of work hard, and you’ll get to where you want to be.  People who don’t work are lazy, they are drains on society.  The pain as I confront the reality of having to accept social security feels like shards of grass embedding themselves in my soul and heart.

I’m lazy. I’m useless.  I’m stupid.  I’m lazy.  The mantra repeats, over and over, again and again.  All of my worst dreams are coming true, even as another part of me feels genuine relief that I don’t have to worry about rent or food this month. If you had tried harder, you could have done it.  I know this isn’t true.  I know that I truly tried as hard as I possibly could.  This does not shut up the voices in my brain.

For all that I broadcast about disability acceptance, autistic strengths, nothing to be ashamed of – I am ashamed.  I am ashamed that I couldn’t make it in the ‘real world’ and ashamed that I may never be able to. 

“What would have happened if you’d gotten that dream job?”  my mom asked me recently.

“I would have burned out within weeks,” I admitted.

“Yes.  That’s what I think, too,” she said.

I got social security on my first try.  This is unusual.  Part of it, I know, is that my doctors knew what to write on the forms, but part of it is the part that I’m having that most trouble wrapping my mind around.  Yes, I’m that disabled.  Yes, I’m that impaired.  No, I cannot work full time – not now, probably not ever.

The United States government, after all, for all the talk of welfare and disability fraud, doesn’t actually make it easy to qualify as a disabled person.  There are dozens of forms to fill out, reports to be made, every IEP and therapist visit you ever had must be documented.  Luckily, my mother is an extraordinarily organized person so was able to find all of these documents with ease, dating back to when I was three and a half and the forms were mimeographed in purple ink (shoutout to whoever can still remember that smell.)  Still, my mind keeps coming back to the fact that, all along, I was actually more disabled than I ever thought I was.

Because the government doesn’t give out social security to people who are a little bit awkward or who have a little bit of trouble learning.  It gives it out to people who annoy others so badly that they ruin funerals and weddings.  It gives social security to those who have meltdowns, long, horrible, hours-long meltdowns, over the social security office running late with its appointments.  It gives it to people who cannot stop self-harming, who take enough psychiatric medication to knock out a horse, who cannot make back and forth conversation without help, who cannot organize themselves or fill out forms or budget on their own.  Who have no real understanding of the stock market despite having a graduate degree.  Who go to one meeting and are exhausted for the day. It gives it……..to people……..like me.

I feel the desperate need to make it clear here that I don’t want social security.  I don’t want to take away resources from other, more deserving people.  But there exists right now within me so many dichotomies, so many factions, I feel as if I am at war: I don’t want it, but I do need it.  I don’t think others should be ashamed of getting it, yet I am ashamed.  I don’t think that a person’s self-worth should be tied to their ability to contribute monetarily to the economy, yet mine is.  My ideals and principles are sound.  My feelings are another matter entirely.

Little kids know what adults do all day: they get up, they go to work, they come home.  Recently someone asked what I did all day.  I explained, and they said that ‘oh, so you basically do what everybody else fits in on the weekends and after work.’  I felt ashamed then.  I felt worthless.  Is my life just made up of hobbies, then?  Am I so slow that it takes me all day to do what others do a in a few hours?

I tell other people constantly that there is nothing wrong with being disabled, that self-worth should not be tied to your ability to produce.  That the American ‘dream’ has been directly damaging to disabled people by making us equate our self-worth with how much money we earn.  That disability and autism are not a tragedy.  I tell the parents of autistic kids to not despair, that their kids will be fine.  I tell and I tell and I tell, and sometimes, some days, some days like today, it feels as if I am telling a lie.

Because the truth is, that I don’t know if I will be fine or not.  I don’t know if the world will end tomorrow in the haze of an atomic bomb, but I am increasingly worried, increasingly certain, that it will.  Which begs the question, then, what is the point of doing anything?  Why should I try anything if we are all going to die tomorrow? How do I stand with my principles while at the same time making connections that I need with people who go against those principles?  How do I even attempt to look for paid opportunities when all my non-paid work fills up my days and nights?  How do I improve my physical health when staying on top of my mental health? 

I have too many questions and not enough answers.  I spend too much time reading and not enough time doing.  When people criticize me, I am quick to agree, but when people praise me I think that they’re being ridiculous because if they knew the real me, they would hate me, too.

A child was dedicated at my church recently.  The parents were asked for their hopes and dreams for their child.  Among other things (including that he would acknowledge his own place of privilege, which was cool) they wanted the baby to grow up to have satisfying work and good mental and physical health.  Their dreams, the dreams of any parent, didn’t include a disabled child.  Nobody grows up to think, oh, I want to be disabled.

“Just because you don’t get paid for it,” a friend reminds me, “doesn’t meant that you don’t work.”

This is true.  I do work.  I write, I volunteer, I research.  I’m trying right now to establish the history of slavery within my church and finding that it’s a much bigger project than I thought it was.  (I knew there were enslaved people buried in our graveyard, I didn’t know who they were.  It turns out that various historical societies have very different views on who they are and all are certain they are right.)

I bake, I read, I show up, I sing.  I take comfort in music and musicals, rituals and rain. 

I remind myself that I may be grown, but I will never stop growing, and I will never stop fighting, either.


When I grow up

I will be brave enough to fight the creatures

that you have to fight beneath the bed

each night to be a grownup
Just because you find that life’s not fair, it
doesn’t mean that you just have to grin and bear it.
If you always take it on the chin and wear it
nothing will change!
Just because I find myself in this story,
It doesn’t mean that everything is written for me.
If I think the ending is fixed already,
I might as well be saying
I think that it’s OK!
And that’s not right!
And if its not right!
I’ve got to put it right!


(lyrics by Tim Minchin from Matilda the Musical, song: When I Grow Up)


One thought on “When I Grow Up: A Social Security Story

  1. The details of my life are different, but the gist of this happened/is happening to me, too. Thank you for sharing your experience. I feel a little less alone now.


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