My scary reality 

I had a horrible think earlier. If the metra train has emergency I won’t be able to get out the emergency window unless some random person decides to pick me up out of my chair and throw me out. And same thing in buildings where you can’t take the elevator in case of fire or emergency. And I can’t say anything or ask for help if like I’m in a new apartment that catches fire or a person comes in. Me did learn can text 911, but what if that’s not fast enough or Me not by my Dynavox. I know Allie can try to get help but most people don’t listen to dogs since they can’t use humans talk, especially if she not has her service dog vest on. I’m almost as helpless as my stuffies in an emergency. And I’m not so sure of strangers wanting to help me. Most people at least here seem very much all about themselves. And in emergency most people only think of themselves, or if they has family that needs them. I don’t have anyone besides Allie. I know I’m not the only person that faces this everyday and even some people has it worse. But most of them has family or caretakers to help and make sure they ok. I don’t mind being different, I love me, but some things are kinda scary of not being able talk or move your body. What if my body hits someone on its own who don’t understand it’s my differences, not me wanting to. A few weeks ago I hit physical therapist, what if she didn’t know I wasn’t in control? The wrong person may try to beat me up or press charges or put me in a psychiatric hospital again. Did you know that a girl was just killed by her mom with permission from the court? What if they do that to me? It’s been tried before when me was small. I’m not just a burden on people or society. I’m a great friend who loves to laugh and go to the zoo. Just because I need help doesn’t mean my life isn’t worth living. But people with disabilities die earlier. Some things can’t be helped but some things can. I encourage everyone to look for videos of people who need and have eye tracking to communicate. They have limited or no control of their body but they are still people who have feelings and thinks. Nobody gets to decide if someone life is worth living. How is it ok to tell people they can’t kill them selves but someone else can decide if they should die. Why would you rather kill a person then find ways to improve they life? 

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Seeing me and my (dis)ability 

I know there is this like war on words of if a person is disabled or has a disability. It’s more like a war on disability itself where everyone loses. This is on all disabilities but there has some groups that have picked they own side- Deaf people like that instead of has deafness because it’s a culture and Autistic people mostly seem to think the same (but not all do). They use it to empower themselves.     But Me thinks everyone is wrong. Both groups are doing the same thing and making the “disability” a separate thing from the person. Why is this bad? Because both ways focus on the differences not the person 2)both ways separate the person from “normal” people. For the most part you don’t say “So my friend black friend Daniel. . .” Or “So my friend with blackness Daniel. . . ” . You say “So my friend Daniel . . .” And if it makes sense to help the person understand the story you may later mention he’s black (or African American if you’re proper). It’s the same with everyone no matter what the difference is. What happens when you separate the “disability” from the person is you get 2 kinds of people- 1) the kind that only sees your differences and 2) the kind that tries to ignore your differences. We all know of the 1st kind who are either nice and “I’m so sorry” or want to lock us all away or worse. But what’s the problem with the 2nd? Well in my life what happens with them is they become so busy ignoring my differences they forget to accommodate for me. It may be forgetting to talk slow or maybe trying to take me somewhere that I can’t handle (or do because my physical differences) or assuming I understand everything going on or acting like my body language is the same as theirs (with my physical differences and neurological differences it almost never is). Both kinds of people are harmful, have no understanding of my challenges, and are impossible to communicate with. I don’t want people to look at me with pity or awe, just basic respect. 

So what’s a better way? Drop the label disabled altogether. If it’s important then say the diagnosis. Don’t make it shameful, just a everyday fact. I have nonverbal autism and cerebral palsy. I’m not ashamed of being different, and I’m not some sort of special kind of human. (Saying Autistic adult sometimes make me think of saying Siberian Tiger instead of just Tiger lol.) This makes us all “normal”. Some people have Jewish beliefs, some have blue eyes, some have Chinese ethnicity, and some have Down syndrome. 

Why is that important? Because then you can see the person as a whole, which means spending time with them doing everyday stuff while being respectful/mindful of the differences. For example if you have a friend that has Jewish beliefs and you have a BBQ, you make sure (hopefully) there is some kosher food there and tell them of the food options what to expect . You don’t exclude them because of their differences, nor do you make the whole BBQ kosher because of them. Now if you want a friend that has autism to come you make sure there is a safe place for them to go calm down and tell them of what to expect the day to be like. You don’t not eclude them just assuming they don’t want to go, nor do you change the entire BBQ to what you think is autism friendly (which btw since everyone is different there’s not a set standard of autism friendly). 

Why is this a better way? Because it makes it normal to integrate all kinds of people together as human. This is true diversity and respect. This is how you show acceptance, by treating us like everyone else. And by that I don’t mean you do the same exact thing for every person. I mean that you show respect for everyone differences no matter what it is. Lots of people would not feel disabled if they felt included. Being different is a normal thing. But society is not made for different kinds of people, and that is what puts the dis in disAbility. By accepting it’s normal and making everything in the community accessible to everyone we can way lower rates of depression in those with differences. And we can help more people live in the community and be more independent and contribute to society, which would give money to communities instead of taking the money away because needed to run institutions. Everyone deserves to be part of a community. Because we are all humans, and have more in common than different. 



Functioning?

I know there’s all this stuff of high or low functioning and stopping the levels. But that’s not what this is of. There is another part that is important to think of and that’s if a person can live independent/alone or not. This is mine thinking place of my functioning and able to live alone. 

There is a pattern of what people think of me. If you only see me for small amounts I’m low functioning and where is my caregiver. If you spend a few hours by me or see my writing I’m high functioning despite my obvious disabilities (and you think I’m way smarter than me am). If you take the time to know me and close I’m low functioning but strong and smarter than people expect but in different ways. And everyone is wrong. I’m not low functioning or high functioning. I don’t need to in eyesight all the time. But I can’t even pretend to be neurotypical for a few minutes. Should I live alone? I don’t know. Can I cook? No. Will I burn down the apartment? No. Do I need help? Yes. Do I need to be told what to do 24/7? No. 
I know I’m like a child. I spend most my time watching cartoons, laying with my stuffies and toys, or  coloring. Or playing kid games on my iPad. But I have the responsibility of adult. I have to find a way to eat and put on clothes and pay rent and go see doctor. I’m not the best at any of those but I do them eventually. I have a lot of supports on Compass (Dynavox) and the iPad to help with these. Do I do better with people help with those? Yes. But there’s more to living with people than getting help. When I’m alone I have way less (and less severe) meltdowns and shutdown. I control my sensory environment. I’m not miscommunication with myself. Nobody is trying to make me be age appropriate or be social. Nobody is messing up my routines and rituals. Nobody is upset that it takes me hours and days to do things. I’m not a burden on anyone. I’m disappointing anyone by not hugging them or being able to do things they think I should. If I go to the store I can leave if I need to or take hours and nobody will care. People come with expectations and they needs. I have a hard time with my own needs, I can’t handle anyone else’s. I’m not trying to be selfish or uncaring but I’m just not able to. I don’t need expectations, I need you to see me as me am not who you want me to be. I’m sure some of this comes from my past. the abuse and the homelessness and the aloneness and abandonment, but also the times I’ve lived somewhere with people. As much as I know I could use help it’s not worth my sanity. I can’t be hurt anymore on purpose or accident. I love the peace of my own safe place. I may not take the best care of my physical health, but my mental emotional health is better. I’m mostly happy with myself and my life when I’m not worry of what society wants and expect of me. 

Accept us, love us, but mostly See Us

So there has been sadness. I have Facebook, and luckily most of mine is just following some favorite cartoons. But I also follow a couple of autism pages to feel less alone. And recently I have like 5 friends. And every sometimes Me see something sad, like the autism guy that they shot him worker. And recently a parent kill they child. And it’s a thing that parents of us special kids can do that and people feel sorry for the parent. I don’t understand. How is it ok to kill us? Why not if you can’t handle then to get help? Who are you to decide our thinks and pretend to know the future? I don’t have hate for you and I’m sorry there’s so much sadness in your thinks, but you can’t take it out on us. And if nobody gets in trouble then it stay ok to hurt us. Many times people think we are sad when we are not. My face looks upset most the time but that not how me feel. And the things that would make you sad don’t make sad at all. No I’m not normal and I don’t want to be. I don’t feel bad that I’m not dating. I don’t want to go out with friends every day. And the things that can make sad killing me and others like me won’t fix. If you think I need friends then maybe go online and try to find other people who have things in common with me like loving paw patrol or Disney and having a difference (disability). If you’re scare me won’t learn to do a thing, find a different way to teach me or think if it’s important to me or just you. Like I need help with cooking/eating. But did you know lots of not disabled people can’t cook. It’s not important. Eating is but cooking is not. So then find ways to remind me when to eat and keep things around that I can eat that don’t need cook. If you’re truly concerned of our quality of life then you fight to make it better not to end it. But lots of times it’s more about your pain, not ours. And it’s ok you’re in pain. But get help. Don’t take it on us. Please.

When me was small my Mamá try kill me lots. Me had so much abuse most my life. And because therapy like ABA tell us to do what people want me never know was bad. Me was think me am bad to make people upset. So many rapes and cuts and scars. How am Me supposed to know if you really love me or just say that? Nobody who wants to hurt you says that, they say it’s to help you or teach you. 

Even when is not that bad it still hurts. Me was spend time with a person. And lots of time the person walks away when me am try type something. Or decide me can’t go somewhere because they don’t want to take my wheelchair. They was always getting upset and impatient with me because I can’t talk or walk or even understand what they say fast. And get mad at me like me can fix that. And I don’t understand. If you say you love me and accept me then why are you always mad at me for how me am. And why don’t you want take the time to see what I have to say. I work so much hard to go out and not have meltdowns and even more hard to understand what you say and find a way to reply. If I can work so hard to find a way to communicate then why can’t you take the time to listen? And if you don’t then you definitely can’t say how Me feels. 

Lots of people even me was not able communicate when small and had behaviors and no miracles cure. But just because it takes longer doesn’t mean it never happens. People with developing delays and intelligence disabilities still grow and learn just differently. And just because we may struggle with words and/or making our bodies work doesn’t mean we don’t have feelings. We still have love and sadness. We can still be happy. Even if you don’t like the things that make us happy are “not normal”. If you are the one taking away our happiness then you can’t make the excuses that we will never be happy, because you mean that we won’t be happy doing the things you want us to. Very different. There is a thing some people say of physical disabilities for learning called presumes competence that means belief that they just because a person can’t move good they can still understand you. And it’s very good for like people who can only move they eyes. But there’s a better thing to do. Yes it’s good to believe that no matter how different we are we can learn. But more better to believe we have feelings just like every human. You need to see us as real people because we are. People with disabilities are not dolls to show off how pretty you make us look or robots or other toys to go look what I made him do. We are all people with real feelings that need to have a say so in our lives. Ask us things. We all can have a way to say yes or no- some can talk, some has a behavior that shows, and some can use blink. And we all have likes and dislikes.