I have no words for how horrible this is.
This is a common misconception. People on the spectrum do have feelings, but often have problems expressing them. They don’t need to have their emotions just ignored or pushed aside. What they do need is some extra love and understanding.
Yes, it is ableism and it should be called out. I am fine with whatever words are thrown at me, but some people are not. It’s not unreasonable for them to ask people to not use words that hurt and degrade them.
It’s an unpopular opinion, but I don’t think that ASD needs to be cured. We love our son and his autism. It is a huge part of his personality and I wouldn’t change it for the world. I think it’s time for us to shift some of our focus from autism awareness to autism acceptance.
What would a cure for autism really look like?
I love it!
Thanks for not killing us at birth. Now can we work on equality and accessibility?
This is an amazing look at the beauty of being different while giving more information about ASD than I got from N’s first doctor appointment.
I have been asked several questions about me in a personal sense rather than general gimpy questions so I decided to dedicate my first podcast to my personal life. If I missed anything, please let me know. I am not sure if I can post the podcast here so I just decided to post the transcripts. I will try to correct any mistakes, but I think the speech to text function has finally learned my accent.
Me: Welcome to the first episode of “Gimpin Ain’t Easy”. I’m joined by —
A: Hi, I’m Artemis. I’m G G’s sister from another mister.
T: Hi, This is Tammy, the token able bodied person
Me: Although Tammy is not disabled, she has known us for long enough to be gimpy adjacent.
A: OMG! Did you just say “gimpy adjacent?” That’s amazing. I’m totally stealing it!
T: Y’all are so hilarious! I know this is going to be fun!
Me: I certainly hope so. I was a little worried about how to dive into this so I think having y’all here will give a more balanced view. I thought it would be nice to have an AB person reacting all of this because Tammy obviously knows I’m a wheelchair user, but she doesn’t know the full story. Why don’t we start with a little bio on each of you and how we know each other.
A: We met in the 2nd grade, right?
Me: Probably. I think we have always been friends so I don’t really remember.
A: You don’t remember a lot so I won’t take offense to that. (Laughing) I am a mom of two, a 9 year old boy and a 2 year old girl. My husband works out of town so I have traveled quite a bit. I have a invisible disability, generalized anxiety and type 2 diabetes, so a lot of times I don’t really fit into either the disabled or able community.
Me: You know, I really don’t understand why that is, but I have heard it from many people. Looking normal and still having to deal with health problems on a daily basis is harder in my opinion. Some people cut me some slack because they can see how I am struggling, but a lot of them don’t give the same compassion to N when he has a meltdown in public. I have even had a old lady yell “Your mother shouldn’t have to put up with this in her shape!”
T: Are you kidding me?!? How was that supposed to be helpful? Did her screaming cure his autism? We all have our trials to deal with. Everyone’s pain is valid.
A: You are so wise and should pass the wisdom onto the normals for us (odd voice)
T: shut up, you goofy butt! (Laughing) Wait….I’ve got a question—
Me: you just can just can’t follow the schedule can you? Troublemaker! (Laughing)
T: you shut up, too! (Laughing) Seriously, why are you calling your kid, N?
A: Now we must be SERIOUS (odd voice)
Me: Come on, we have already annoyed her enough. (Laughing) Tammy, I thought I should protect his identity since he can’t really give consent for me to air his dirty autistic laundry.
A: she didn’t even notice that I called you GG. That’s for Gimpy Girl, T.
T: you’re right! I didn’t even notice (Laughing) ok, so I am a law student who still mooches off her mom. I met you at church a few years ago. Once I said i wanted to focus on civil rights, you tracked me down and asked if disabled people are included in that.
Me: What did you think about that? I bet it was weird.
T: to be honest….it was a little weird. (Laughing) I had not ever really thought about disability rights and it had not been covered by school yet. The professor looked taken back when I asked.
T: yeah, but that kind of shows how much awareness is needed.
A: okay, enough stalling. Gg, let’s get down to business …
T: and defeat the Huns?
Me: Holy crap! A Mulan joke? I love you (Laughing)
A: since you don’t usually make us laugh like big donkeys, I think we need a Tammy Scoreboard. It’s at one right now.
Me: Y’all almost made me pee! Ok, we could do this all day so let’s get started.
A: question one- what is your official diagnosis? Well, this could take all night! (Laughing)
Me: my primary is marfan syndrome with hypermobility, variant strain.
T: wait… you need to explain each of them because we aren’t doctors.
Me: well, half the time, new doctors don’t know what these are either. I always call ahead and say “look this stuff up so I don’t spend half the appointment explaining it”. (Laughing) Marfan Syndrome is a genetic disorder that affects the elastin in your connective tissue. It causes the ligaments and tendons to stretch and tear so it causes severe joint damage. That’s the hypermobility part. It also affects the skins so my skin will strech and tear. Like if it get stitches, they just tear out of my skin. Thankfully, we have a variant strain so we don’t have the heart problems usually associated with marfans.
A: So that’s why your incisions open up so easily after surgery. I remember when you had your butt surgery and the incisions on your belly kept popping open. Speaking of your butt…
Me: What a beautiful segway! Yes, because my tissue is so damaged, I developed a rectal prolapse, which is when the rectum separates and falls out of the body.
T: wait– your butt is inside out?!?
Me: it was but it was pulled up and nailed down to my sacrum. (Laughing)
A: when was this?
Me: I was 29 the first time, 30 the second time, 32, 34, and 36 the other times.
T: didn’t they do it right the first time?
Me: oh, yeah, but my tissue continues to streach and tear so it doesn’t last more than a couple of years. It’s worth it so that I don’t have the pain or problems with it, but the surgery sucks big time.
A: What about your spine?
Me: Again, it’s because of the weakened ligaments, but I have spinal instability. That means that I have partial paralysis in my lower spine. I can stand, but I can’t walk and I don’t have a lot of feeling in my lower half.
A: and your neck and brain?
Me: my neck is unstable too so it created a Chiari Malformation. Basically it means that my brain has drooped down into my spinal column.
T: How are you alive right now?!?
Me: by the grace of God? It sounded horrible to me too, but I have managed it okay. We decided not to try surgery because I have had some serious side effects complications from minor surgery and this certainly not simple surgery.
T:So the plan is to just walk around with a fallen brain?
Me: I don’t walk. (Laughing)
A: OMG ! What would we do if we couldn’t laugh at Tammy’s shock at all this?
Me: see, this is why I am kind of vague about it. It scares away the normals! (Laughing)
A: so we are running out of time. Let’s just do some rapid fire questions to wrap it all up. How many surgeries have you had and what was the last one?
Me: 22 and I had the rest of my teeth pulled a couple of months ago.
A: The best thing about being in a wheelchair?
Me: I always have a comfortable seat while hubby has to stand most of the time. Oh, and wheelchair seating at events are always awesome.
A: The worst part?
Me: I always have to call ahead to check if a place is accessible.
T: ADA laws have been around for literally decades. Are there really places that are still not accessible?
Me: Loads of places aren’t or they have strange instructions like “drive around back, call us, we’ll put out the piece of plywood that we use as a ramp, then drive back around and park. When you leave, give us 20 minutes notice to get the plywood and have someone lock the backdoor again”
T: are you serious?
A: OMG, do we have to be SERIOUS again? (Odd voice) This isn’t how you do rapid fire questions!
Me: Oh we will get back on track. Tammy, to answer your question, yes, it happens, but I just don’t go there. I’m not going to fall of some ghetto plywood ramp.
A: what’s the biggest misconception about your life?
Me: so many people assume that if I’m not crying about being gimpy then I must be a sicko that enjoys being “broken” or they see me doing something mundane like grocery shopping and call me inspirational. I don’t know why buying cereal is inspiring, but apparently it is.
A: What are your hobbies? Let me guess, wheelchair basketball! (Laughing)
Me: yeah, my brain injury would love it. No, I watch way too much tv with my husband, build crazy stuff with N, read crazy books, cook, and I have a huge yarn addiction.
T: that’s true. I saw you crochet in your sleep once.
A: Aside from medical equipment, what is your favorite thing to help you feel AB?
Me: Definitely the internet. I can buy almost anything from Amazon. I can network with others and I have a lot of friends who I only see on Skype or Facebook. I was also surprised to find women in my same position — homeschooling moms with special needs children who have a disability of their own to deal with. It made me feel kind of normal.
A: What is the one thing you would do if you weren’t disabled that you can’t do now?
Me: Smile pretty? ( laughing) I really think that my life wouldnot be all that differentif I was AB. I have found ways to adapt most of the things that normal people do. It’s more about being willing do something in an unconventional way as long as you are living your life to the fullest.
A: I don’t want to sound goofy, but that was pretty freaking inspirational. I think this is a great place to stop. Say goodbye, everyone!
Me and T: Goodbye everyone! (Laughing)