There is a dollar figure attached to my right to exist. Do not tell me it is not there. That is a lie. I see it every time I look in the mirror as if tattooed on my forehead. There exists a ledger; a balance sheet of what I contribute and what I take.
Intangibles count for nothing.
Joy counts for nothing.
Nothing.
Every op ed piece I read defending food stamps or other benefits bend over backwards to point out the majority of recipients are employed. The majority are good people. Good people work.
But I do not work. I am autistic, and being the autistic I am means I am real world, social model disabled. I do not work because I cannot. There are a dozen hypothetical ‘what if…’ or ‘should be…’ scenarios in which I could hold down a job, but that is not my reality.
How much of myself do I have to lay bare for you to accept that work, as it exists today, is a thing I cannot do? I tried, and I had to choose between powering through another year or two that would kill me or come damn close, or admitting I cannot so my children could grow up with a mother.
My childhood was infused with a popular feminist theme. I was taught that a Real Woman is financially independent. She doesn’t need a man be it a husband or larger entity (The Man) to support her basic needs or the needs of her offspring. A Real Woman knows children are an accessory to a career, not something one builds a life around. I regularly heard the words “housewife” and “brood mare” used interchangeably. I am loathe to believe this is real feminism, because empowerment that exists on the denigration and neglect of other’s needs empowers no one.
Growing up, I was also told over and over again my worth was tied to doing Great Things. That lesser people lived ordinary lives, and that for me to live an ordinary life would be tantamount to complete failure. In order to be a worthy human, I needed to be financially independent while actively improving society. Nothing less would do.
So do I own my complete failure, or do I redefine what it means to do Great Things? I embrace both, which yields a very messy work in progress.
I started to apply for disability once, but every worker I spoke to asked the same question: if you are too disabled to work, how can you be a fit mother? I was told, repeatedly and in no uncertain terms that if I submitted an SSI application, a Child Protective Services investigation would be in my future. That is not a risk I could take. My children need me. I know this as much as I know anything. I am the best possible mother on earth for those particular children. That is not negated by my sometimes inability to speak, or walk, or work.
I cannot do it, and I am sick to my teeth justifying myself on this. I had to justify my dirt poor, EBT dependent self daily. Now I am privileged enough to not be poor. Now I am loved unconditionally for exactly who I am by a partner who can work, but I refuse to hide behind that veneer of acceptability. I cast off strangers’ easy assumption that I choose to stay home. If I could choose, I likely would stay home, but I don’t really have that choice. I’m too disabled for gainful employment, and it would be a slap in the face to too many people I respect to fake that.
So here I sit, grateful for the privilege of things I still do not take for granted. Indoor plumbing on demand. Food my children can actually eat. Health insurance, and the ability to make copays. But all those privileges; privileges that should be rights, do not make me a better person than I was when I bartered baked goods made with food stamp purchases for enough cash to make sure my cancer was still in remission.
I am just as autistic,
I am just as disabled, and
I am just as valuable.
It's Bridget's Word 
Thank you. For everything.
I appreciate you, my friend.
You don’t have to lay yourself bare, says the me who wants to protect you. But I am so privileged to hear your stories and the world needs to. And I am very happy to be your friend. ((Thank you.))
You make me happy. 🙂
You are more valued than you know
This is heartbreaking and beautifully upbeat at the same time
Thank you, Amy! I love your writing, and am honored by your kind words. I’m so glad I got to meet you this summer. 🙂
This entry made me think back to 1978 when I was paralyzed. I saw no quads in rehab. I see why and was told the quality of life was too low and nature was allowed to tie its course. IN other words quads were too expensive to be human.
How sad that makes me.
There just shouldn’t be point where a human is stripped of their right to be. I have a spinal issue. For now, I have intermittent loss of use and feeling in my limbs, but I may eventually be quadriplegic. I hope at that point I still have people who will protect my human value.
You are valued. You are f’ing perfect. You give things that they cannot measure, & those are the most valuable things sometimes. You are worth more to me than any Doing Big Things For Big Money person I can think of.
You got me all teared up. So much love to you. Really. I’m without words.
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I can relate quite a bit. I’m a SAHM, which I love and prefer, but it wasn’t the plan originally. Due to my own life challenges, I can’t be a mom and hold a job at the same time either. Even if I could, my two special needs kids require a lot of care and its my privilege to provide that for them as no one else would ever be able to. We’re on food stamps and my husband works super hard to support us. I can tell you that I hear the unsaid thoughts people have when I say I’m a SAHM and receive food stamps and I cringe. I end up feeling compelled to say, “Well, my daughter needs… and I …” or, “once the kids are grown I will be working again” to justify things. I’m trying to learn that its just not their business, smile, and say as little as possible. The sting is still there though.
As a mom of an autistic child, and as a woman who suspects her self to be an undiagnosed autistic, I tell you that you have tons of worth. It sounds like you are a sensitive member of the community and are raising up our next generation with dedication. Society functions as a unit, and people forget that any people group, family, village, tribe, shared resources to band together. I wish people would remember the importance of that. *hugs*
It’s wonderful that you have that partnership with your husband! You don’t owe anyone an explanation. You are using awesome judgement. Your children’s needs may be why you’re full time at home, but the same people who think you owe them an explanation are the people who will twist that into an indication that your children are “less than” or a burden, and those treasures of yours are so much more.
My foodstamps have been radically cut. When I got Disability I went from $200 in FS to $80. Then $60. Then $16. And that last only because my Service Dogs’ exspenses count as my medical exspenses.
The ‘you can buy food with or cook with others on FS is a left over anti-Communist clause. Frankly, I think it’s 1st and 4th Amendment Violations to include it and it’s no one’s business how adults creatively streach their food money. I have no shame about being a Taker. We all are. No one stands all alone – that shit is mythology.
Pure mythology (and pure shit).
Sorry about the cutbacks. I knew someone who lost her kids and spent a couple months in jail for using food-stamp purchases for revenue (I mean tiny, like cash for toilet paper revenue). It only takes a couple of cautionary tales to scare us into shame and submission.
Bridget,I am in much the same position as you (with a few technical differences) I possess a de facto ability to work. But the way I present to employers mean I can go to 15 interviews a month and still not get hired. Even though I am highly qualified with a bachelors, extensive public speaking experience (since age 8. I am now 28.), a manic focus that can take apart the 200 pages of the healthcare bill and understand all of it, and attention to detail that some have told me borders on pathological.
I am currently a library page, the same position I had in high-school, when I have the the training of some librarians. Just not the piece of paper required for a starting reference position. Anyway…Bravo!This is a wonderful piece of writing. At the same time, working without the equal pay and opportunity as typicals is not all that great. You’re not missing much.
Thank you! Would that we could bait and switch. I can script through an interview to land jobs for which I’m not even remotely qualified, but I can’t actually do the day to day work.
I am autistic and feminist, and real feminism believes only that women should have all choices without obstacle. Being disabled just makes that all the more complex for us, because as disabled people we do not have that, and as women we don’t have that. Its a double obstacle. Its very likely they are putting even more judgement on you because you are a mother. (women)
Nobody should be judging your choices at this point, they should be judging your situation and asking what barriers you are facing. People are ignorant and think they know what is best, rather then accepting that they have a lot to learn. I hope everything works out, and I can’t believe you are barred from services for being an autistic mother.
I am so very lucky that in the last few years, I have no longer had to worry about basic needs, and I have a supportive home life.
My life changed, but the systems are still broken.
wow this really, really hit home for me. I’ve been feeling so pathetic of late because I can’t work. I have Aspergers, my partner also has Aspergers and can’t work either. I didn’t want this to be my life. I didn’t want to always be struggling on the brink of poverty. We don’t have Food Stamps in Australia, and our government pensions are generous, so it’s not the same as what others go through…. but I didn’t want this to be my life. 😦
Please don’t feel pathetic. Work and income are not a proper yardstick of anything other than the ability to purchase consumer goods. If you live truly, love others, and try to do right, that is what matters.
I love this, and thank-you so much!
I have been many kinds of woman. A woman with a rich man, a single mom on mothers allowance, a single mom living with mom, a married woman who stays home and takes care of the kids and rubs her husbands shoulders, a working mother and wife who makes almost no money while chasing a dream…
I believe I have always been my most valuable self when I’ve remembered to be my most valuable self. The me that adores her life and family, and shares that joy and what she’s learned with the world.
I have been that woman most (not all!) of my life, regardless of what I’m doing or not doing to contribute to society in the opinions of others.
Thank-you for sharing so beautifully and with such candor!!
You are very valuable indeed!!
“I believe I have always been my most valuable self when I’ve remembered to be my most valuable self.”
I really like that. 🙂 Thank you.
I hear you. I am living a similar dystopian nightmare, except that I am mildly autistic, disabled from a work-related injury, and without insurance. You are whole, you are wonderful, you are loved. And you are a damn good mother.
Thank you! I do try. I’ve never took my children for granted, so I think that helps. I wish good things for you.
I have been diagnosed with “high functioning” (whatever that means in practice, right?) Autism. If that were my only obstacle, I don’t have children and I have a living situation and support network such that I might possibly be able to support myself… I mean, even though it was just the last couple years I learned how to use a frying pan and to actually tolerate the transit system in Boston (I’m 31), I still think I might be able to swing it… Maybe haha… (And that is not comparative commentary on your situation, but rather just a reference point for mine)
However, also due to a mean case of OCD, a severe mood disorder (which amazingly seems to be the least of my worries now b/c I’ve worked my butt off at how to manage it), plus allergies, epilepsy, and migraines… all of which are conveniently “invisible”, I found myself applying for disability and being approved almost a decade ago. I still receive benefits and there are still people in my life who have no idea.
When I read what you wrote here, particularly the bit about “I am sick to my teeth justifying myself on this”, I kind of thought to myself – “well hell, I am too!”
So then I made a public post on Facebook basically saying that I’m on disability and have been for a while,but I’m still awesome and have amazing things to offer and to clues.some based on the profit they make is a shame and to not use them to their capacity.
We all, as a society,need to redefine what it means to do great things.
People often feel a great thing must be equivalent to a tsunami which rushes in, crushes buildings and destroys whole cities with its immediate force.
A great thing can be a whisper, like a constant dripdripdrip of water, slowly eroding a new path down a rock face. …just one drop of water can cut into granite.it takes time and patience and tenacity. But it could be one person, writing a blog post that shows a great strength of character and shares great ideas.
Very few people are willing to go up against the masses with challenging ideas, when it is so easy for anonymous people to tear anyone down.
You’ve inspired me; I think that is a great thing.
I’ve already shared this entry with everyone I could.
I hope you don’t mind.
“…but I’m still awesome and have amazing things to offer and to clues.some based on the profit they make is a shame and to not use them to their capacity.”
Ha, sorry.
That should read:
that I’m on disability and have been for a while,but I’m still awesome and have amazing things to offer and to VALUE SOME based on the profit they make is a shame and to not use them to their capacity.
Thanks for clarifying the typo. I really do get confused by things like that, and spend ages wondering *exactly* what was supposed to be there. 🙂
Bravo to you for being so open. Color me impressed. I still have family in denial who can’t see my multiple health issues and atypical nature for reasons I know are more about them than me. The result is I keep to myself a lot.
Thank you for your kind words. We are all trying so hard, even if others don’t acknowledge that.
Thank you for this entry. You touched upon all the things that are constant pieces of inner guilt in the back of my mind. I have AS and I am a single parent to an AS child. I have tried countless times to obtain and hold a job or forge a career, only to be faced with embarrassment and humiliation when the opportunity fizzles out. I have been on income assistance now for a few years and I don’t see an end in sight to it. I was also raised with the idea that my worth is represented only by what I would do for a living in order to contribute to society. Apparently, raising my child in a loving, supportive environment is not conducive to contributing to the greater good – in fact, I am one of those who is a drain on the taxpayer’s dollar. That bothers me so much and it does oftentimes make me feel like a worthless human being. Reading this helped me feel and know that I am not alone.
You have no reason to feel guilty (but, yes, I sometimes feel guilty too). There is so much more to worth than money. Money is not the base foundation of morality. Love, laughter, service, etcetera are not little treats we get after we make enough money to deserve them. They are the basis of humanity. Your child is blessed with your shared experience to guide them.
Of course the “I hate Feminism” line caught my attention – but thank-you for clearly outlining the intellectual poverty of such ideologues – and linking to how it infects all government decisions – fitness for motherhood an euthanasia.
Thanks for visiting. I’m guessing you came over from the piece on Big Blue Wave. Honestly, I was a little confused by that piece. Projecting my writing as an indictment of euthanasia was a broader leap than made logical sense to me.
Not that I am complacent about the very real dangers facing disabled people in medical care (http://youneedacat.tumblr.com/post/47251303580/are-you-at-peace-with-your-decision) Also, I’ve been the parent fighting to not take my child off life support, and not a day goes by that I don’t feel joy that my child got the time they needed to heal.
However, by no stretch of the imagination do I hate feminism. I love feminism so much that want better from it. I want my feminism to be big. So big that it truly includes all of us. I want a feminism that welcomes my trans* sisters, my sisters of color, my poor sisters, my atheist sisters and my sisters of faith. Those with disabilities whether visible or not. I want feminism to include my queer sisters and my straight sisters, the mommies, the happily child free, and those struggling with infertility.
If the focal point of feminism is able, white cis women of a certain socioeconomic status, even if I can occasionally pass as one, it is meaningless.
The point is, I truly feel feminism for everyone, including men- all men (see above list) makes us all stronger.
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I feel your frustration, I also am suffering from mental illness and disability. It is difficult for people who look “normal” but suffer from various mental health issues because we look capable of doing anything. The stigma I believe comes from the misconception that many people have the “blues” or feel “anxious”, but the moods that these “strong people” are walks in the park for us that are truly suffering. I think we need to have compassion for these people and forgive them for their ill conceived stereotypes. I used to have the anger and hate for these people, but that just causes separation and more pain.
Jim, I know it is hard to let go of that anger and hate, but it’s so dang draining to keep it going. Good for you. Remember, each day is a victory because it’s another day you lived as your own self in spite of any prepackaged expectations others put on you.
Reblogged this on DIFFERENT, LIKE YOU. and commented:
What a refreshing, courageous and most of all HUMAN viewpoint on societal expectations, independence and defining success. Thank you.
Thank you so much!
Itsbridgetsword, we’re looking for more people to contribute articles to our blog. Would you be interested in submitting a piece?
Here’s more info:
Content created should address stereotypes, point out social stigmas, raise questions and/or help explore the meanings of ability and disability in any context, all the while focusing on our universal diversity, hence “Different, Like You.”
Include a brief bio about yourself.
Your work will be displayed on our blog, raffcincy.wordpress.com , as well as on our facebook and twitter
Try to keep it between 500-800 words, breaking it up into readable chunks for people. I am encouraging people to insert pictures into their posts between text to add variety.
Thank you for having the courage to share your story. You hit on so many issues that have become part of my life, disability, the frustration of dealing with bureaucracy, invisible illness, anxiety, the desire to make an impact on those around you though things have gotten in the way, creating your own definition of feminism, the question of self worth when your life plans change from where you thought you would be… just, thank you. Much love.
I never thought of it as courageous, but thank you!
This is such a refreshing piece. Blogging should be your job. This world can seriously do with a perspective change. I love what you said about wanting better from feminism. I love what you said about the messages we are given as women today (be independent, kids are accessories etc.) I love that you talk about people’s assumptions about you. It’s as if one is worthless if they do not have a job! And even if you CHOSE to not work, it doesn’t make you worthless. It’s a choice. My sister is a homemaker. Always knew she wanted to be one. And everyday is a success for her because her daughter is one of the most loving and beautiful human beings I have ever come across.
The thing that irritates me the most if that social security programs were made to empower people. I think you are super strong in making the decision to not go for it. And I said a thank you prayer that you don’t have financial strains. But I cannot imagine the lives of those who do not have money!
You are not only valuable my friend, you are invaluable! The world needs a serious restructuring in terms of its perspectives and you are providing it. Your job is to blog and conscientize (yes I made that word) the planet!
More power to you! Yes, I am a feminist. And my feminism salutes you 🙂
“Your job is to blog and conscientize (yes I made that word) the planet!”
That is an awesome made up word! Love it. I’ll do what I can. 🙂
Bridget, I shared your post as published on the Huffington Post on my facebook page. It got a lot of shares and people are discussing it passionately. You did that. You started a conversation about the true value of people! Like I said, you are NOT ONLY valuable, but you’re INVALUABLE! I hope you can keep writing. I will always share your blog. Lots of love and hugs.
I found your blog yesterday through this article (I can’t remember where it was posted) and I have read each and every one of your posts. I am a “normal” (whatever that means) professional, mother of two children and I have enjoyed reading your well thought-out and eloquent posts. I just wanted to say that you are appreciated, strong, smart and an amazing human being. I hope you will continue to write – as I will surely be back to read more about you.
Wow, thanks, Christine! I appreciate you taking all that time reading my work.
Should you ever question your value, come back to the comments here. Your work is evident, and it is good, important work.
You’re too kind, Jessica. Thank you.
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I’ve been on disability for seven years. My husband’s and my finances keep getting tighter. I “don’t look disabled,” and over the last seven years I managed to convince myself I could, and should, go back to work. I finally found a work-from-home position. Know how long I lasted? Exactly one four-hour shift. I feel like a loser and a failure for not financially contributing to the household (my disability income is half what I brought home at my last full-time job). This article makes me feel slightly less guilty. Thanks so much for that! You’ll never know how much I appreciate it.