* Image: “Change the world Not your Autistic child” via the awesome Parenting Autistic Children with Love and Acceptance (PACLA). If you are not familiar with PACLA, get familiar with them!
Forgive my absence, but the end of 2014/ beginning of 2015 has been difficult and I am sure you and I will visit these things over the next year. However, rest assured I am slowly working my way back to all of you. The following post is quite long (you know how I am) and addresses something that has been on my mind for quite some time. And while it’s difficult for me to think on, and possibly controversial to some, I need to talk to you about it. With that, I’m dedicating this piece to my fellow disability rights advocates and activists for your selfless hard work and dedication. I am honored to know you and work along side you…
“We may encounter many defeats but we must not be defeated.”– Dr. Maya Angelou
To support this piece and with the utmost respect, I have included several quotes from Dr. Maya Angelou, a brilliant writer and advocate, whom we sadly lost in 2014.
So… Why Is Acceptance So Damned Hard?
I talk about acceptance all the time. It generally shows up in my posts at least once or twice per, reason being it’s a really big deal to me. And if there’s one thing that’s been made concrete since I started this blog in 2012, it is that some folks don’t like the idea…
Some treat the idea of acceptance as if it’s a bad thing and that parents of Autistic children, and disabled people themselves who advocate for acceptance, have given up. As if acceptance itself is the easy way out and we took it because we didn’t have the backbone to stick it out and fight. I cannot tell you how many times I have witnessed fellow advocates trying to explain that acceptance was an unexpected surprise, a treasure discovered at the end of a long, hard journey, not something they succumbed to or a last resort. So here’s what I’m feeling…
If I want acceptance for myself, as I am, and for my kids as they are then essentially it is believed that I’ve given up.
For those who roll their eyes at my advocacy for acceptance for Autistic (all disabled) people as we are, and for those who verbally attack self-advocates, the parents who advocate for their children, and allies advocating for friends and many times, complete strangers,
I’m not finger-pointing, preaching or shaming, because I don’t work that way, and who the hell would listen to me if I did? I believe in educating. But before I can do that I am asking kindly: Please explain why my kids, my friends and I, are shamed for accepting ourselves as we are. For accepting that some things not only can’t be changed, but don’t need to be…
“It is time for parents to teach young people early on that in diversity there is beauty and there is strength.” – Dr. Maya Angelou
I want to know what goes through the mind of someone who tries to tell people they are wrong for loving their imperfect selves, their imperfect children and the countless imperfect people they support in their advocacy,
Because we’re all imperfect, even the so-called “normal” non-disabled folk.
Acceptance is not the easy road. I have seen more of my friends verbally attacked, shamed, silenced, laughed at, trolled and bullied merely for loving themselves and their children just as they are, disabilities and all.
Acceptance is the Hard Way
It’s hard because of the misinformation – generally via non-disabled people/sources – out there working against us: Misinformation from helpful organizations who claim they advocate on our behalf, which they do not and I talked about that here; Professionals and educators who in 2015 still adhere to the Medical Model of Disability (the idea that disability is a problem located solely within the person. It focuses on individual deficit and thus sees disability as something to be fixed or cured) The ones who refuse to see anything but deficits, and who refuse to listen to Autistic people and what we have to say. The very same professionals and educators who confidently tell others what we need because we couldn’t possibly know ourselves… because we’re Autistic (*sigh*). You see, most people don’t even know there is another way to see disability. And there is, and it’s brilliant:
Social Model of Disability
The Social Model is based on the idea that disability is socially constructed rather than a part of the person. A distinction is made between impairment and disability with an impairment being any physical, sensory or cognitive limitation. Disability on the other hand is the way society constructs the individual as a problem based on the perceived understanding of impairment. So a person not being able to walk is only made problematic by the fact that we have built a world that is inaccessible to wheelchairs. Therefore disability is the result of the environment rather than something within the individual. – Both Medical and Social Model definitions via Dr. Gregg D. Beratan
Unfortunately, the Social Model hasn’t yet gained as much attention as it should - we’re working on it - and because of that, the Medical Model assures society that because we are disabled happiness with ourselves just the way we are is an impossibility. I mean, Autistic people can’t be happy and if we are then we are not Autistic enough, (Judy Endow addresses that here). However, if we are considered by non-disabled people to be Autistic enough (Amy Sequenzia nails that here), then we can’t possibly know any better (*sigh*). So many times it seems we face Lose/Lose situations, yet we stand strong in our convictions and continue to advocate. Against all of the:
challenges • obstacles • inaccessibility • discrimination • marginalization • victimization • pity • grief • oppression • prejudice • fear • ignorance…
We Accept Ourselves and Each Other.
Is It Asking So Much?
No, it’s not. Those of us who accept ourselves as we are, are able to do so because we’ve found community, and within that community made up of family, friends and allies, we’ve found acceptance for who we are as human beings. We understand that being disabled doesn’t mean we are “less than” or that we should expect a lesser quality of life than non-disabled people. It seems to elude those who claim that we’ve given up that acceptance for most is an uphill battle…
If one considers advocating, writing, blogging, public speaking, protesting, testifying, educating, tweeting, Facebook(ing) and so on, for hours on end giving up, then I guess… that’s what we’ve done?
What I wish detractors could see, especially the parents of disabled children, is what we are actually doing. While I am a self-advocate I don’t advocate solely for myself and my kids, but for all disabled people. And I mainly do what I do to educate in the now, to hopefully change minds and alter perceptions so people begin to see beautifully flawed, whole human beings, not living deficits.
“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” – Dr. Maya Angelou
I’m hoping my advocacy for acceptance is working for the children, including those whose parents are angered by my advocacy now. For many, their children are young and I’m guessing they haven’t quite wrapped their heads around the idea that one day, their child will be an Autistic adult…And very possibly advocating like we do now. How will these parents feel when their now-grown children want acceptance? When all of the therapies didn’t change them (or worse… Did) and they’re just as Autistic as they were on the day they were born. And, by their standards, maybe some of the therapy worked and their children appear less autistic, or maybe therapies didn’t work. Either way let’s say these young adults have decided they want to be accepted as they are. What if they want to become advocates? What if they have found a community that accepts them and has helped them love who they are (that’s how it happened for me), and are no longer willing to “pass?” They might even advocate against therapies designed to make them look less autistic. It happens. Many of the young adults I advocate with are doing that very thing. So then what?
So then their children will be where I and other disabled people are now:
Advocating for acceptance and inclusion in society, and being reprimanded and bullied for their advocacy by the same type of parents who will tell them again and again that they don’t know what they’re talking about. That they don’t know how hard it is…
Like what we advocates are experiencing now.
I have a couple questions for those who try to silence us and disregard our advocacy:
- How will you feel when you see your child being silenced by others as if what they say doesn’t matter?
- How will you feel when your child, speaking (typing, signing) from personal experience and wanting to educate, is told he or she can’t possibly know what they’re talking about?
That’s the one that really gets to me: Anyone that would purport to tell a disabled person that, in regards to disabilities, they don’t know what they’re talking about.
Acceptance means giving up?
Again… Not hardly.
Out of Love
I don’t for one second believe all of these folks are purposefully undermining our advocacy. Just as I don’t believe there is always malicious intent (trolling not included). I believe many are frightened. Like the rest of us, they love their children so very much and they fear for their futures and want to protect them…
I’m there. I get it.
But we have a choice to make. We can jump on the Medical Model freight train and treat our children as if they’re broken as we robotically nod our heads and do what we’re told by professionals focused on fixes rather than our children. And we can do this without question, bending and forcing them into a mold they can’t possibly fit, never once questioning what it is they want. And as we do this, we can watch as our words and actions, work to undermine our children making them believe they are broken and eliminating any possibility of success through their own self-determination. Or we can advocate for acceptance and nothing less…
Nothing will protect our children better than a society that accepts them for who they are.
Advocacy Kicks Ass
Please tell me, are people under the impression that I want to be at my laptop blogging away, asking again and again for my children to be seen as whole? To please, please see that my kids, too, can be productive members of society if they’re included? Every parent’s dream, right?
Blogging is great and advocacy kicks ass and I’d be lying if I said I didn’t love both.
My topic of choice, at times, leaves much to be desired and not because it’s not worthy. Disability rights activism is awesome but you see, my job in essence is to reach out to human beings and ask them to accept other human beings who, through mainstream media, unreliable reporting and fear-mongering are found to be unacceptable. I have friends, people I have grown to know and love, called “less than human” because they are disabled. So while I love advocating, and have committed a good portion of my life to it, there’s this little voice inside I try to talk over that whispers a painful truth:
Advocating for acceptance hurts, and… It. Is. HARD.
It hurts to think (know) for instance that because my kids are disabled, I have to ask society to include them while their non-disabled peers are accepted automatically. I’m basically asked to prove that my kids count. We have been taught through segregation, seclusion and self-contained classrooms that our children are not equal.
“Prejudice is a burden that confuses the past, threatens the future and renders the present inaccessible.” – Dr. Maya Angelou
We have been taught that disabled people are miserable, unfortunate individuals that want and need our pity. I know I grew up thinking those things and talked about it here and here. Because of these things, I don’t believe that all of the parents I see fighting acceptance or trying to silence our advocacy efforts are doing it out of hate, they’re doing it because they don’t know, just like I didn’t.
They don’t understand that when they walk for cures, or open their wallets to finance autism prevention, they are actually advocating AGAINST their very own children.
The very organizations they hand their hard-earned money over to, and that are supposed to be advocating for us (the ones that take money from the disabled community to finance their mission, which seems to focus on eradicating our neurology) are working against disabled people. And they prey upon frightened, well-meaning parents, depending on them to help finance it. They take our neurology and use it to fund research for elimination of our people.
Parents are told by professionals to fight their children’s neurology, scared into employing as many early interventions, trainings and therapies as possible to “fix” their children. Then large charitable organizations swoop in and support these parents by fueling their fears…
So we fight for acceptance against the tidal wave of ignorance that works to drown out our advocacy by telling society we are less than they.
Acceptance as a Road to Peace
It really can be and many of us have found it. We have found the love in acceptance and through that acceptance, peace. It’s why we continue to advocate even as others tear us down. So, can I ask you to think on it? Please? Can I ask you to consider that acceptance just might be a way to find your peace? Will you be strong and stand against those who say your child is less? Will you join us not only for your child, but also for the children of parents who aren’t strong enough yet, because I truly believe one day they will be…
Acceptance takes time,
It’s an uphill battle
And it’s hard.
And your child, every child, deserves it.
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Awesome organizations that support Acceptance: