Wednesday, November 27, 2019

Gratitude

239 words
2 minute read

Our planner (since July) has had a section dedicated to gratitude.  I thought I'd share the things we've been grateful for this year.

1.  Found

2.  Dragon

[Image is: Tonia smiling with a stuffed dragon on her shoulder]
3. You there to help with Greenie

4. I love you

5.  I love you more

6. I LOVE YOU SO MUCH

7. You're the best!

8. Love you and I am here whenever you want to / can process anything

9. NAPS

10.  Jordan's singing stream

11. Apartment

12. Reconnecting with [former camper]

13. Teamwork makes a dream work!

14.  "Look at my old neck!"

15. Extra money after hair appts

16. Weekend to rest!

17. Love you!

18. So proud of us for prioritizing inner children

19. Love inner children

20. Ride to get flu shots

21. Inner children time

22.  Chanel Miller - Know My Name

23. 3 days off!

24. Lots of time to rest

25. Love you!

26. Nadiya's book coming (Finding My Voice - Nadiya Hussain)

27. Flannel sheets yum cozy.

28. Chanel - gentle touch.

29. Jo's portrayal of PTSD on Grey's.

30. Poloing with friends.

31. NaNo planning

32.  Jordan - Schoolin' life :)

33. [Friend] demonstrating safeness

34.  Extra hour of sleep!

35. Friends

36. Support system

37. You and your support

38. Processing times

39. We have time

40.  A peaceful day on NC-versary

***

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Wednesday, November 13, 2019

10 Big Things I've Accomplished This Decade

885 words
7 minute read

I was on Twitter this morning and came across this tweet, which got me thinking about the past ten years and some of the things I've done that I am proudest of:

10.  My Second Book of Poetry Was Published (2011)


Here I am in the summer of 2011, holding my second book of published poetry.

I was a little slow to get going (nothing in 2010).  But by 2011, I was raring to go!  My second book of poetry, Some Bright Morning, was published.

9.  Personal Essay Was Published in an Anthology (2011)

One of my essays, "Playing House" was also published in the anthology, Idol Meanderings.

8. Learned to Meditate (2012)

There came a time in life when my anxiety and (let's face it, probably trauma) was shifting into high gear.  For the first time, I tried to do some self care.  For me, that looked like putting some good (mmm, orange) lotion on, lying down, and counting my breaths to 100, as I listened to the Soundscapes channel on TV.

7.  Got Training and Babysat 7 Children in Foster Care (2012-2013)

I still recall the day I spoke to a friend on the phone, and she shared the difficult time she was having finding people willing to take the training (including fingerprinting and a background check) to be cleared to take care of her foster kiddos while she worked.  I said, "Well, I can do it."  (Yes, I had to go back a second time to get re-finger-printed because CP meant that I had a hard time keeping my balance and getting an adequate print, but it all worked out.)  Today, I still think of those kids fondly and their cute questions and comments:

4-Year-Old: What's balance?  Oh.  These are my funny-crutches!  They go all by theirselves!

7-Year-Old: [Watching me scoot down the stairs]  Oh, that's so much fun!  I do that all the time! ...It would probably be more fun [for you] if you were lighter.

6.  Created Tonia Says (2014)

I still remember the night that summer when a friend on Facebook shared an article about teaching nondisabled kids to show love and respect to disabled kids.  It was written by a parent, and I found I had many differing views.  I ended up in a longer private conversation with the friend, and later, that conversation became the basis for my first blog post ever, written specifically for this site.

5.  Connected With The Disability Community (2015 - 2019)

This has happened several times over the last four years, but there is still something magical about the moment I saw my friend, Ellen Stumbo's daughter for the first time. My first connection to someone like me in almost twenty years.  Having not been around anyone with CP aside from brief weeks as a teenager, it was Like Looking in a Mirror, indeed.

4. Helped Change Disability Representation on TV (2017)

In January, 2017 it was clear that our favorite TV show, "The Fosters" set out to tell a story about how disability impacts a family.  Our favorite character, Jesus, sustained a Traumatic Brain Injury.  While I had been recapping every episode, I now asked Tara to join me, and we reviewed each episode for disability representation.  It didn't take long to see that this representation was veering down a dangerous path.  Tara and I continued to recap and share our thoughts with the writers via Twitter for more than six months.

Finally, when it seemed there was no hope left we read:  We appreciate all of your thoughts this season and we continue to discuss a new path forward for Jesus.  Consider us enlightened.  The final ten episodes of the series were different in tone.  There was a memorable scene where the parents apologized for their horrifying ableism...which, we think...is nothing short of life-saving:



3. Removed Myself From Lives of Toxic People (2017 - 2019)

Starting in 2017, I began to prioritize my own safety.  It wasn't easy.  It's still something I struggle with, at least seasonally.  ("Am I doing the right thing?  Am I a horrible person?")  But the truth is, a lot of us in the disability community face dangerous levels of ableism in our day to day life.  Ableism that's often perpetuated by those closest to us.  You have the right to leave dangerous situations.  Safe people do exist.

2.  Read 300 Books (2010 - 2019)

This is obviously an estimate, but seeing as the average number of books I've read the past two years hovers around 30, I think this is a safe approximation.  Discovered three of my all time favorites this decade (The Kindness of Strangers by Katrina Kittle, Second Glance by Jodi Picoult and ROOM by Emma Donaghue.  My favorite new read this year is definitely Know My Name by Chanel Miller!)

1.  Wrote 11 Novels (2010 - 2019)

Yes, you read that right.  I'm currently finishing up my eleventh novel in the last ten years.  These (especially the last six) are super dear to me.  I have loved working on them (especially number ten) with Tara, for most of a year.  Looking forward to finishing number eleven by the end of this month.  (Speaking of...now I actually have to stop blogging and go write chapter eleven...)

***

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Monday, November 11, 2019

Recognizing Subtle Ableism

1,934 words
15 minute read

This was originally written as a guest post for the now-deleted blog "The Disabled Muslim" in April of 2018


Ableism (discrimination against the disabled) is everywhere.  Most nondisabled people recognize that it’s ableist to overtly mock a person’s disability-related symptoms, to park in an accessible space or use an accessible stall if one is not needed, or to bar a disabled person from consideration for a job or entry to a building due to their disability.  But ableism can present in subtler ways.

If you’re out running errands, and you see a visibly disabled person, pay attention to how people around them are treating them.  Chances are, you may any of the following 6 sneaky ways ableism can masquerade as other, less damaging things.  Rest assured, though, ableism is ableism, and it is always damaging.

Pity / Burden:  

It’s human nature to react with sadness and sympathy over the sudden injury of a friend or loved one.  In this context, sadness and sympathy is expected - even appropriate.  It’s discouraging, painful, perhaps even traumatizing to lose abilities you once possessed, even for a short time.  It can be daunting to have to ask for help if you’re not used to it.  To have to rely on others for things you are used to doing for yourself.

But the reason many feel like they become burdens when they become injured, or suddenly disabled has a great deal to do with how we, as a society, treat disabled people.

If you listen carefully around any disabled person (child or adult), or any parent with a disabled person, chances are good you may overhear an exchange such as this:

Stranger:  Oh my God, what happened to your leg????
Disabled Person:  Nothing.  This is just how I walk.

Or this:

Stranger:  What’s she got?
Parent of a Disabled Child:  Down Syndrome.
Stranger:  Oh, I’m so sorry…

The important thing to remember is this:  growing up with a disability feels the same to those of us born disabled as it does for you to grow up without one.  It feels normal.  There is no need to pity us.  No need to think of us as burdens on our families.

If you feel bad about access barriers and discrimination we face, come alongside us and help us fight that.

Inspiration:

I bet you’ve seen the news stories.  The latest I can recall is about a kindergarten aged child who shocked his parents by learning and reciting the Pledge of Allegiance with his classmates.  The child was largely nonverbal.

Now, is this an accomplishment?  Absolutely.  Those are complicated words, requiring a lot of work to memorize and articulate.  But this child’s accomplishment is a personal one.  One to share with his parents.  People who love him.

It crosses the line when the child is objectified for a fluff piece read largely by a nondisabled audience.  An audience who will likely feel that kids like this boy are a burden.  That his disability makes him an object of pity.  Nondisabled readers consume this media to feel good.  But it is at the expense of disabled people’s personhood.

[Me, on the beach with my crutches in Mexico, 2007.  Not in any way accessible.  But I promised my little brother I'd touch the ocean before we left.  Doesn't make me an inspiration, just a keeper of my word.]

I was once walking outside of my residence with my crutches.  The caretaker in the building was sitting outside visiting with someone.  She stopped what she was doing and said:  “Are you taking your daily walk?  To inspire me?”

At the time, I could not think of a way to respond.  So, I didn’t.  But now, words are there:  No, I wasn’t out walking for her.  I was walking for me.

We do not exist to reassure the nondisabled population: “It could be worse.  You could be me.”  (Seriously.  Would you like it if someone thought this about you every time you walked past them?  Would you like it if they were bold enough to tell you to your face?  I bet not.  I bet it would make you feel pretty terrible.)

We are living our own lives.  Just as you are.  Let us inspire you for the same reasons your nondisabled cohorts inspire you: because we accomplished a personal goal after a lot of hard work, because we earned something.  Not because we’ve gotten out of bed.  If you personally know someone for whom it is an accomplishment to get out of bed, then by all means, encourage them in that.  But don’t assume that the disabled stranger or acquaintance you know is an inspiration just because you assume their life is difficult.

Remember: our life is normal.

Lack of Wheelchair (or Other Mobility Device) Etiquette:

This one is a bit of a mouthful, but let me see if I can streamline it:

Disabled people such as myself who depend on mobility devices to get around view our adaptive equipment as extensions of ourselves.  Our wheelchairs function as our legs.  Our crutches, or walker make it possible for us to ambulate.

So, just as it would be rude to talk about how unwieldy and inconvenient a person is when getting into your vehicle, it is equally as rude to comment in such a way about a disabled person’s mobility device.  I have heard these remarks countless times throughout my life.  Each time, instead of hearing, “This chair is too heavy,” I heard:

“Tonia should not have come along.”

“This trip would be better, easier, and more fun without her.”

“She is a burden.”

Because my wheelchair enabled me to go places with my family.  To keep up with them.  By remarking disparagingly about it, my family was unintentionally sending me a message that I was too much to deal with, and should have stayed at home.

Similarly, just as it would feel unaccountably invasive and dehumanizing to have a stranger lean on you, or hang their jacket from your body as though you were a coat rack, it’s equally off-putting to have a stranger or distant acquaintance hang their clothing from - or brace themselves on - my wheelchair.  Because it functions as a part of my body, these strangers are essentially all touching me without consent.

This also applies to well-meaning strangers or acquaintances who may think I am struggling and set out to push my wheelchair without asking me first.  It would be in no way okay to pick up a stranger or acquaintance bodily and physically move them where you think they ought to go.  If you would not do it to a fellow nondisabled person, don’t do it to us.

If you think we might need a hand, or a push, ask us.  We’ll tell you whether we do or not.  If the answer is no, respect that.  We have the right to refuse help just as you do.

I Don’t See You As Disabled:

So, I can’t lie.  Growing up, and steeped in internalized ableism, I used to see this as just about the highest form of flattery anyone could give me.  Because I saw disabled people as inferior myself, I did not want to be seen as one.  In fact, because we don’t move through the world in front of a mirror, I identified as nondisabled, all through growing up.  But a kind of...subpar nondisabled.

Being told back then that someone didn’t see me as disabled made me feel that all my work trying to be “just like everyone else” was paying off.  But as an adult, who has worked (and is still working) to confront the loads of internalized ableism I have within me, I have changed how I view this well-meaning statement.

These words are often meant as a compliment.  But let me see if I can point out why it doesn’t feel like one.

Men, if a woman approached you, and said, in a well-meaning, reassuring voice that she “doesn’t see you as a man,” that wouldn’t feel affirming, would it?  Assuming you identify as a man, you’d probably be pretty insulted.

Women, if a man approached you, and said, in that same voice that he “doesn’t even see you as a woman,” like it was supposed to be a good thing…  Would it feel good?  Again, if you identify as a woman, you’d probably resent this man.

Understand, it feels the same when nondisabled people tell us that they don’t see us as disabled.  (Or tell us we are “too pretty to be in a wheelchair.”)  We are disabled.  We are pretty.  We are in a wheelchair.  These are all truths about us.  Aspects of who we are as a person.

If you find yourself trying to reassure a disabled person in this way, remember that the only words we are hearing are:  I don’t see you.

Overcoming Disability:

“She didn’t let her disability stop her!”  

You’ve probably seen this one in the inspirational news stories about disabled people.  It’s nonsense.

It’s nonsense because competing in softball when you don’t have legs or gymnastics when you have a prosthesis or Down Syndrome does not mean a person has overcome their disabilities.  They still have them.

They have overcome ableist society whose closed beliefs and refusal to adapt have often kept people with disabilities from participating in activities we should get to participate in.

This is also problematic because it stems from disabilities being seen as burdens, and/or reasons to pity someone.  And it puts enormous weight on disabled people to fight an intrinsic part of ourselves.  To fight a losing battle to make our disability a nonissue.  To make it as small as possible, for the comfort of nondisabled people around us.

Nondisabled Know Better:

Have you ever heard a waiter ask customers at a table what they’ll have?  Pretty common, right?  What about if that party has a person with a disability in it?  Have you ever heard the server skip the disabled person and ask the next one, “What will she have?”

I know it happens, because I have been that skipped person.  The assumption made here is that the nondisabled people know better than the disabled people what is good for them.

It happens all the time.

A disabled person says: This is an issue for me.  I cannot access this thing.

A nondisabled person responds: No, it’s not.  It’s fine.  You’re just not trying hard enough.  (Because Nondisabled Know Better often coexists with Overcoming Disability.)

It happens when a disabled person makes a decision regarding their health that is countered by a nondisabled voice.  (Maybe the doctor we are there to see.)  Or perhaps, it’s a bit of unsolicited advice from a friend or family member, suggesting a painful medical procedure or surgery and disregarding our discomfort.  We are constantly struggling for autonomy over our bodies.

This is an issue because it dismisses disabled people’s actual lived experience.  Our own words often do not hold weight in society - often, until a nondisabled person echoes them.

So while you cannot single-handedly deconstruct countless years of ableism as a nondisabled person, you can back us up.  Don’t speak over us, but if you hear us saying that something is a problem for us, join us.  Encourage other nondisabled people to hear us out.  Ask us if we have an idea of what might help.

Remember that the best way to be an ally to a person in a marginalized group is to listen.  Learn.

Be on the lookout for the subtler ways ableism can masquerade.

***

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