Making History!

The date was July 17, 2015, the day before the Disability Pride Parade. It was also my Nana's 80th Birthday. This was something I was looking forward to all year. I decided to sleep in that day because I knew I had an important speech downtown that night and I wanted to have lots of energy.  The speech was something that I had mentioned in a prior blog post called "Do You See Me?" As part of the Disability Pride Celebration of the ADA 25th Anniversary, I decided to give this speech as part of a poetry slam held at the First Methodist Church. I felt like it was a success and I made an impact on people.  This is the reason I do what I do. I was very happy with myself because I memorized most of my speech, which is a skill I have been personally working on ever since I started Toastmasters.  I knew I had to contain my excitement because I had a performance in the morning as well as my fellow dancers would be expecting me to do my best. However, that night after the speech, I had a difficult time sleeping because it was very hot outside and when it gets extremely hot or cold outside, I have a difficult time breathing. This made me nervous. The next day was very important to me but before I knew it the alarm clock read 6:59am and I had to get up. I made sure I ate a big breakfast which is rare for a "non breakfast loving person." On the way to the parade I listened to all of my favorite music so that I could be all pumped up and ready to go. My playlist was a mixture of pop, country and inspirational songs that I knew would motivate me for the rest of the day.  On my way to the parade, I saw a guy who was at the poetry slam the night before. He said,"Hey Jessica Martin! Good job last night!" This made me feel pumped up and ready to go.  Then before I could think about anything else, it was time to line up and make history. I would be making history that day because we were celebrating 25 Years of the Americans with Disabilities Act or the ADA. The whole time I was squealing with delight.  Then after what seemed to be forever, it was time for Momenta to join the parade. One of my friends said, "Jess you are so excited, we are just walking down the street!"  What she didn't realize was in that moment we were making history!   After the parade we waited a long time and it was our turn.  The music went on and I was in my element.  The energy in the crown was indescribable. I was so happy.  Before I knew it the group piece was over and it was time for me to do my solo. My friends helped me with my costume change and I got into place and that was it!  It felt like a dream.  I was nervous but it was all okay.  I usually don't get religious in my posts but after a while I forgot about the crowd and I listened to the music and I could feel G-d's presence. It was wonderful. My only regret was not dancing with my friend Maddy this year.  We talked about it and we hope to dance together soon I was feeling good about the parade. That was until today...

One of my teachers was at the parade and saw my performance. She asked me if I want to perform at Counter Balance. This is another history making celebration of the ADA 25th Anniversary at the National Museum of Mexican Art on Sept 19 at 2pm.  I still can't believe it!! I feel like I just got accepted to Juilliard!! 

Even though I am finished with this Blog, I will never forget where it all started. Thank you for your love and support. With lots of love and gratitude, 
-Jessi

Freedom and Independence Part 2

At the beginning of the summer, in one of my dance workshops, we talked about the difference between core movement or constricted movement and expansive movement or distal movement. That has to do a lot with what I have discovered over the years because as I’ve grown into the person I am today I’ve learned that there are constrictions and freedoms to just about everything you do in life. There is a song called “I am Woman” from the 70's that expresses the singer's gratefulness for being independent about her life and that she is a capable person. This song fits me perfectly this month because I’m getting ready for the next step in my life. 

At the end of August, I will be moving into my own ranch townhouse which is a perfect example of the way I have progressed when it comes to my independence and a perfect way to end this blog or first chapter of my independent life. Over the years, like this woman, I have learned a lot about myself, grown as an individual and realized what’s really important in life. Even though I will be closing the first chapter of my independent life I want to continue writing a blog because it is a way for me to help others, along with getting my thoughts out through a forum where I can express myself. I am extremely grateful for all of your love, support, and encouragement over nearly six years of living on my own. It all hasn’t been easy and the road hasn’t always been smooth, but I wouldn’t change it for the world because it helped me to become a more confident and independent person like the woman in the song, like she says in the two lines at the end of the first verse:

“And I’ve been down there on the floor

No one’s ever gonna keep me down again”

Just like the song says, even though I’ve gotten far in my life, I know there is still a long, long way to go, and that is another reason why I want to continue writing my blog.

Before I end this blog I would like to share one more story about finding ways to become more independent and find a way to maintain some privacy.  As you know from either your own experience or from what I have told you, when you have a physical disability it is very hard to keep things private especially if you need a lot of physical assistance from others.  But one very efficient way to get some privacy if you don’t want other people to hear your conversation is to use technology to your advantage. Try to text or email some one instead of a regular conversation face to face if you are able.  I am not saying face to face conversation isn’t important but if you need privacy this is a great way to get it. 

Do you have any ideas, as my readers, for my next blog title, before I close the key on this chapter and open a new one? 

With  Love and gratitude,

Jessi

Ps.  Look for one more post for this blog.

Freedom and Independence Part 1

For this month and next month I'm going to talk about freedom and independence because as all of you know, I am very passionate about this subject and I absolutely love the Fourth of July! But the material I am going to reflect on for this month came from my writing class, and that's when I realized I couldn't just talk about independence and freedom for only one month.

So here's the first chapter. I'm sure a lot of you have heard of the song “This Land is Your Land.” But the question I was asked was “Do you believe this country was made for you and me?” I don't believe this country was made for you and me until these three things happened.

The first was when the Civil War ended in 1865. The second was when women were granted the right to vote alongside a fellow man in 1920. The third one that I would say made our country made for you and me is when the ADA, or Americans with Disabilities Act, was made official in 1990 so that all people with disabilities would have the freedoms to go to public places just as much as people without disabilities.

This is one of the reasons why I have been very passionate about the Disabilities Pride Parade and choosing to do that instead of going to camp. I feel it is my duty as a person with a disability to honor such a beautiful concept and make sure it continues for years to come. This year is particularly important to me, because it marks the 25th Anniversary of the ADA.

Another prompt that I found incredibly meaningful to me in the class was “How do you crown thy good with brotherhood?” I believe there are only two ways to “Crown thy good with brotherhood,” like that song said. One is to give your time or money to charity, and two is to follow through with what you believe in. That is why I have decided to dance in the Disability Pride Parade. I also want to say that a brother or sisterhood does not have to start and stop when you are in college.  For example if you were a  Girl Scout or Boy Scout as a young child that is a form of brotherhood or if you join a spiritual community as an adult, that is also a form of brotherhood.  One of the reasons why I don't mind dancing with younger dancers is because I feel it is a sisterhood. Once we hit the dance floor age doesn't matter and we are just a bunch of different artists coming together to improve our craft.

Another place where I feel a sense of brotherhood is my temple.  A few weeks ago I received an email from my Rabbi congratulating me on my one year anniversary with the Temple and how I am a valuable member of the community.  It feels so wonderful  to walk into a place and know I am a valuable for just being me,   

Along those lines, I firmly believe in these two quotes. The first is: “It is the responsibility of every citizen to question authority” by Benjamin Franklin.  I totally believe this is true because if we didn't question authority, Black people wouldn't have the rights they have today, and women wouldn't have the right to vote. People with disabilities wouldn't have the freedoms that they have today if it weren't for the ADA and speaking out. Finally I’d like to end with one more quote from Martin Luther King Jr. that I feel strongly about: “One has a moral responsibility to disobey unjust laws.”  I will just end that way because I think it speaks for itself.

For this month, I'd like to leave you with the concept of freedom and constraints, and I will explain more next month.

Love,

Jessi

Search Party

When my brother was little and he couldn’t find something (like a movie) in the house he would say “Can we go on a search party to find the video game I lost?” That explains my whole month in a nutshell, because I have been searching a lot in 3 different areas: housing, a roommate and acceptance.  I need to move out of my apartment/condo because the people that own it want to sell it. This is bittersweet for me. My apartment holds  a lot of memories I want to remember because I’ve been in this particular building for a total of six years even though I’ve been in 2 different apartments. I also developed a strong friendship with two people I will never forget.  Another thing I have been searching for is a perfect roommate. No one can replace Tori or Norine and the memories shared between us, but I’m looking for a roommate who is not just a roommate but a Shared Living Companion who can also help me with a lot of my daily living needs.  This is a little different than the arrangement that I had before. The people that are helping me find this Shared Living Companion need to be selective and careful.  Some of the qualities that they are searching for is someone who is clean, likes to have fun, is flexible in what they are available to do from day-to-day and their available hours. I like to travel so living with someone who wants to travel is a plus and someone who likes dogs. I don’t think I will be able to have Teddy back living with me again, but I wouldn’t mind sharing the responsibility of taking care of another fury friend. If you know of someone, please share their contact info with me.

The other thing I have been searching for is not an actual thing but it is acceptance that I will never be able to visit the house I grew up in.  During the winter months it really didn’t bother me, but this time of year it bothers me because I loved the garden and the ability to dance freely outside and on the driveway or the deck.  Sometimes it’s the little things in life that you really miss. There is a song called, “The House that Build Me.” by Miranda Lambert that I love. It sums up how I feel about the Highland Rd House. 

You leave home, you move on and you do the best you can.
I got lost in this whole world and forgot who I am.

I thought if I could touch this place or feel it
this brokenness inside me might start healing.
Out here its like I'm someone else,
I thought that maybe I could find myself.
If I could walk around I swear I'll leave.
Won't take nothing but a memory
from the house that built me.

So I guess you could say that I have been on a search all month but not necessarily a party like my brother called it. -- it hasn’t all been fun like a party. 

Finally, my friends who are really helping me and giving me ideas about future housing are friends from Access Living. It is a place where people with all types of disabilities come together to enjoy activities and ask each other questions. It’s through this once a month program that I found out about accessible housing. It is events like this that help me stay positive and embrace life the way it is. I have also learned that if you search a lot at once it can be overwhelming; so my advice to you would be if you are looking for the answer to a question or a place to live, take time. I know it isn’t always possible but if you give yourself small breaks, the task will be less daunting. I hope this is helpful and may your search begin!

 I also want to thank all of you who made efforts to keep the IAMC funded with the State of Illinois.  For now we have our funding back. I will keep you posted.  I am extremely grateful for all of your support and my employment. 

With love,

Jessi  

Help Give the IAMC a Chance

Readers, 

April 3rd was one of the most difficult times in my life, when it comes to job security, because I was told that due to grant funding, the IAMC (Illinois Association for Microboards and Cooperatives) funds were cut.  It is totally unfair to people who just want to live quality lives, like myself, and people who support them to do so. On my ride to a PATH facilitation training, one that I feared would be my last, I was reminded of a song by Tim McGraw. The song is called "Live Like You Were Dying." It was then that I knew I couldn't take my personal emotions into training. It reminded me that even though I had these feelings, I had to give it my all, and pretend like we weren't losing the funding at all. Because if I didn't think positively, I would then bring my negativity into the room. After that first day of training instead of getting upset about the situation I decided to take action and have my friends and family sign the petition to reinstate this ever-so-important organization. While I was encouraging them to do so I realized the heart of why I was upset.  It was not because of the money.  It was because what we do as an organization is not just work to us it is life changing. This is why I need your help to educate people in Illinois why this funding and work important.  So do your part if you believe people with disabilities should be able to live with freedom of choice.  Please make sure you sign this petition. Also,  call your local representative to the Illinois House and ask them to vote FOR Senate Bill 274. It will restore cuts to human services like the IAMC. Those who have done it already- Thank you!   As Helen Keller said alone we can do so little together we can do so much! 

PETITION: https://www.change.org/p/illinois-governor-illinois-state-house-illinois-state-senate-reinstate-iamc-illinois-association-of-microboards-cooperatives?recruiter=305902&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=des-md-no_src-reason_msg

Love, 

Jessi

See What Happens When You Don't Give Up!

Dear Readers: As I promised, I told you last month that I was going to discuss my goals for my work.  I have spent the entire month trying to be as productive as I can, and really hone in on future plans for work. It is a great feeling to love dance so much that it doesn't feel like work. I am always thinking about how to make physically integrated dance more mainstream and accessible to more people through my work. I am going to be in a piece with other dancers and choreographed by my dance partner, Maddy this coming summer. I don't have more specifics to report now but my mind is always working and I'll keep you posted.   In terms of my speaking career, I am working with my Mom and my speech coach to develop a mission statement to know I exactly want to accomplish as a speaker.  This journey has been difficult and confusing, but all the same, rewarding.  Now I see a clearer vision of my next steps and goals.    Being a Project Assistant for the IAMC is still an valuable position for me. I meet important people from around the state who are advocating for the disability community and I am learning skills to pay forward. I am looking forward to A Day with David Wetherow: Rediscovering Your Personal Power. Check out iambc.org Upcoming Events for details and join us at the end of April.  At the beginning of last month I was experiencing pain that was so intense that I was like, “How am I going to get over this barrier?”  I am very happy to say, that even with all this chaos of trying to figure out my life and my career, my pain level has decreased, thanks to my dedication to dance, NIA and yoga. Finally I would like to end with something else that I have found extremely rewarding.  A few months ago I talked about a breakthrough that I had in dance.  Just the other day I had another one.  In dance you have what is called a working leg and a standing leg.  I was in modern dance class and was beginning to feel, for the first time in my life, that I can feel grounded on my standing leg.  I felt so grounded in fact, that I felt I could lift one of my legs and keep the other one down.  This was a HUGE accomplishment for me, because when you have CP, your body often does not do what you want it to do.  When it does, it is so magical and you feel like you can take on the world!  I wish you good luck on any new goals you have been working on.   Happy Spring :-) Jessi

Goals Setting better late than never

In my writing class, one of my prompts was how I view being 65 – which I found overwhelming.  However, with the start of a New Year I know exactly what goals I want to accomplish in 2015.

            In the area of dance I want to continue making dances with my dance partner and making sure that more people are aware of physically integrated dance because as you all know I’m extremely passionate about this.

            My second goal for 2015 is to go through life with less pain.  With the start of 2015 I’ve had new complications come up as a result of my cerebral palsy.  I had this goal even before I knew about the complications. My dance partner introduced me to a technique called Nia.  It is a combination of dance, Tai Chi and yoga.  So my hope is that with the combination of dance and adding more yoga into my life and nia that my pain will become more manageable.  

            My third goal is probably the hardest one to accomplish financially, but I would love to travel to a far place with my spiritual community because I feel that in this setting we would become an even closer community and get to know each other that much more.

             My last goal for 2015 is to continue to pamper myself as I did this holiday season.  I feel that in today’s society we don’t give ourselves time to just enjoy ourselves; so I plan to budget for time and money to go to the movies with friends and family; and to go to the nail salon to get my nails done.  The people at the nail salon and at the movies know me by name. It feels so good to go into a place where people know your name.  I even applied for a job at the beginning of the year.  I didn’t get it, but at least now, more people in Desplaines know me; and I feel that is an accomplishment within itself.

            So my question for you is, what are your goals for 2015?  If you find it overwhelming to think about your goals for the year; go through your life like I did and everything you do.  Then it becomes easier to create goals and dreams for yourself.   Good luck and Happy New Year!  -Jessi

Ps .   if you notice I did not talk about any goals having to do with my work on purpose because that is the focus of my next post.