Time to Fight for My Rights

Graciela has been taking a Civil Rights in the United States class this semester. The final lesson was on disability rights. Here is her reflection on this lesson and on the class in general. 
Can you have the mind of a savant inside the body of someone who is so motorically challenged that she can hardly speak her own mind? Yes, it is possible! I am this girl that has the most amazing mind that is trapped inside the most naughty body. This is my story of disability and my trying to get access to the many rights that I should have but don’t. 
 
The lessons that we have done in this class have made me really understand that to think that you are going to succeed in the struggle to stand up for your rights without much effort is so foolish. It is hard to break through the societal and cultural barriers that have been in place for many years in this country. Challenging the status quo is never easy, but it is often important and inevitable. That we should stay quiet in these moments in which injustices occur does not help the country progress. 
 
It is not that inviting to make hard decisions about stepping into the ring to fight injustice because injustice often wins. However, when you are called to action then it is hard to say no. When I made my decision to try to work on these issues that impact me and other non speaking autistics it was the moment that changed the trajectory of my life and sent me on my quest to try to stop being so misunderstood. 
 
When it is challenging to use your speech to communicate there is often a lot of misunderstanding in regards to the cognition of the individual. This misunderstanding often continues for years. Trying to be happy with how many perceive you is not easy and often the frustration becomes too much. 
 
I speak from experience. So many years of my life were spent being misunderstood. Sometimes I would break through my silence to show my true capabilities. However, my speech is highly inconsistent. To try to sort through it to see the specks of brilliance is not an easy task. 
 
There were so many days when I thought I would have to succumb to a life of sounds that did not amount to real communication. Having to accept this life was not easy for me. My emotional fatigue left me too exhausted. Having to work through so many years of trauma from being understood in the wrong way by so many experts that claim to know a lot more about autistics than actual autistics do has been exasperating and has left its mark on my tender psyche. 
 
Getting the opportunity to live the life that I want to make for myself is not going to be easy. There are so many obstacles in the way. This is only the beginning of my journey but it has already been so tough to get more access to the education I deserve. I have not been able to get the support that my body must have in order to access the curriculum that I am cognitively capable of thinking through. 
 
In the past, challenges with my speaking made it impossible for my teachers to understand the quality of my thinking. This was intensifying my frustration day by day. Many years of this aggravated my thinking that I was the one who was incompetent and understood less than my teachers. However, I managed to hope for a release from the prison where I had been trapped. 
 
The moment finally came when we found ourselves in Texas learning to really set me free through opening many doors to communication, education and access. I thought I was having a dream! Many hours of the hardest work I have ever done to date have led to what I am capable of today. 
 
Things have been looking up for me, but I still have more work to do in order to access the dreams I have and the words I have to share with the world. When it is possible to dream it, it is possible to make the dream come true. However, I will need more support than most to live out my wildest dreams. Having to depend on others to help me is not easy to accept but this is my earthbound spirit’s reality. It is not going to stop me from realizing my dreams. Without support I would be imprisoned again. I do not want this to ever happen again because the freedom I now enjoy is too lovely to give up. 
 
Doing this class has helped me have more courage to speak up for myself and to think about other ways I can advocate for my rights. Advocacy is tough work! Many people become too drained by the demands of the work, but I want to stick with it because I can tap into a magnificent source of tireless energy.  When I make a name like Graciela stand out in the world of mathematics, then I will know that my hard work paid off. Many mathematicians have had the support and mentorship they needed to succeed. I am hoping I am as fortunate. 

Open Letter to ASHA

It is so hard for me to live my life to the fullest each and every day because of my severe motor planning challenges. These mostly impact my speech, but also impact the way I use my body to interact with my environment. It is the most frustrating thing to not have total control over your body. Stephen Hawking’s body did not work well but his intelligence took him far. Why is it hard to believe that I am in the same situation but have been trapped in a broken body since I was little, and had not yet had the opportunity to show my intelligence to the world?

There are many individuals that use alternative ways to communicate their intelligence to the world. This is my only way I have to write letters like this to make my voice heard.

Have you ever had anyone question your intelligence or the words that come out of your mouth? I guess that it is not normal for you to experience this, but it is my norm. Using a letter board to make my voice heard is laborious and is hard work but it is my only option right now that works for me. Your proposed position statement on RPM is going to possibly take this away from me and from others in the same boat as me. It is hard to believe that these hard earned words that I spell are not seen as real because I need someone to hold the letter board and prompt my body to sustain through my thought. I wish I could spell independently and I am trying, but it takes my body so much time and rigorous practice to gain automaticity.

What is not okay is that there is not more opening of minds to the truth of the potential within me and others like me. This is going to be a significant loss to the field of mathematics if my means of communicating is taken away in an educational setting because of this proposed position statement.

It is about time that words that are painstakingly created from the minds of non speakers by pointing to letters one at a time are seen as valid and true. Each and every individual has the right to make his voice heard in this country, but your proposed position statement would possibly get in the way of enabling some to take advantage of this right.

I want to encourage the ad hoc committee that is in charge of this proposed position statement on RPM to reconsider and to issue an apology to those of us who are able to communicate now thanks to RPM.

Many non speaking individuals are not reaching their potential because of thinking that is not accurate. You have an opportunity to make this right and to stand up for the communication rights of many of the individuals served by the members of your organization.

Thank you for your time and consideration,

A non-speaking self advocate

 

If you are interested in reading ASHA’s proposed position statement on RPM, you can find it here: https://www.asha.org/peer-review/Proposed-ASHA-Position-Statement-Rapid-Prompting-Method/

If you are interested in reading other self-advocates thoughts on this topic please check out: 

Letter to ASHA

https://faithhopeloveautism.blogspot.com/2018/06/an-open-letter-to-asha.html

Response to ASHA proposed position statement in FC and RPM

Proposed Position Papers by ASHA (American Speech Language and Hearing Association) Demean my Communication

http://www.lauranadine.net/?p=3556

 

Learning to Show Affection

I was able to spend five days in the north Georgia mountains with my boyfriend, Jordyn. Seeing Jordyn for five days was interesting because we usually Skype or have short visits at conferences. This was a nice change.

We set a lot of goals for ourselves so that we could work on showing our commitment to each other, but it is not easy when our bodies cannot gain control of themselves. It is awesome to be in a relationship! However, it is frustrating to have no way to try to demonstrate your affection. With the help of Jordyn’s mom we got our bodies under control enough to hold hands. This was my favorite part of our time together.

When we watched movies we adjusted to sitting together. A lot of the time was awesomely spent hanging out with each other. Happiness does not have to be complicated. It is great to enjoy the presence of the one you love.

It is awesome to have the chance to have a first kiss too! This was more challenging to pull off but we had the wonderful support of our moms. It was incredible! It was certainly the best moment of my day!

Many beautiful moments were shared and my Jordyn made me see what an amazing guy he is. I think he is a keeper!