July is Disability Pride Month. Will you celebrate?

       July is Disability Pride Month. The month of July is Disability  Pride Month due to the passing of the Americans with Disabilities Act (ADA) being on July 26, 1990. This year the ADA will only be 36 years old. Not many people are aware that July is meant to celebrate the anniversary of the ADA and people with disabilities. Disability Pride Month was first recognized in 2015, and we have a lot to celebrate because we worked very hard to get where we are today with the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

       People with disabilities come together to fight for what we need in order to lead full and productive lives. This is why we celebrate Disability Pride Month! Other minorities used to join in our fight for rights as well. During the 26 day Section 504 Sit-in, the Black Panther Party played a vital role; they delivered hot meals and vital medications to the disabled advocates. The participation of the Black Panther Party was the reason that the sit-in lasted as long as it did, due to the power and water in the building being turned off. The oppressed minorities created a human chain. 

       There are no more human chains to be formed. People with disabilities are no longer acknowledged by other oppressed minorities. We are not seen, we are not heard, we are not listened to. We are being mocked by our president, and the rights that we have fought so hard for are being stripped away. We are moving backwards. And the worst part is, that no one knows. Anybody who does not have a disability or does not know someone with a disability is not aware of how far backwards we are slipping. However, this is news that concerns everyone, because…  The minority of people with disabilities is the largest minority and the only minority that anyone can become a part of at any time of their life, and if you live long enough, you will become a part of the disability minority.

       Section 504 of the Rehabilitation Act was signed into law in the year of 1973. The law protected people with disabilities from "being excluded from participation, being denied benefits of, or being subjected to discrimination [based upon their disability] under any activity or program receiving federal funding (Cone, n.d.). However guidelines for the law were not enforced. Between 1973 and 1977 the disability community filed a federal lawsuit to enforce accessibility regulations; the judge saying that needs regulations must be issued, but not when they must be issued. This development ignited people with disabilities to take action in order for the regulations to 504 to be signed. On April 5, 1977, over  100 disability rights activists sat in the San Francisco federal Health Education Welfare (HEW) building for 26 straight days. The 504 Sit-in is an example of how the disability community can band together and fight for what we need. The sit-in not only resulted in the first civil rights law for people with disabilities, but also mandated physical accessibility in all federal funded programs, schools, and workplaces. The law also paved the way for the ADA!

       Section 504 of the Rehabilitation Act was the first time that exclusion and segregation of people with disabilities was recognized as discrimination.  However, Section 504 did not enforce accessibility to programs that were not receiving federal funding, therefore denying access to many organizations. This prompted the National Council on Disability (NCD) to release a report in February 1986 that addressed recommendations for federal laws and programs that affect people with disabilities. This report resulted in the first draft of the Americans with Disabilities Act. In April of 1988 the first draft of the ADA was signed into legislation by Senator Lowell Weicker of Connecticut and Senator Tom Harkin of Iowa. This federal recognition put disability activists and the NCD into action. The president of the National Council on Disability, Justin Dart, traveled to all fifty states. As he traveled, he united people with disabilities as well as documented the discrimination and inaccessibility faced in their daily lives. This documentation was published as the "discrimination diaries." Leaders of organizations such as the Disability Rights Education and Defense Fund (DREDF),  Leadership Conference on Civil Rights, and Epilepsy Foundation came together to form a team of people with disabilities to support passage of the ADA. However, the passage of the Americans with Disabilities Act came to a stall.  In March of 1990, over 1,000 activists gathered in Washington D.C. to protest. Many disabled advocates left their mobility aides at the bottom of the capitol steps to crawl up them, which is known as the "Capitol Crawl." The "Capitol Crawl" was to bring awareness of the barriers that people with disabilities face on a daily basis. This protest opened the eyes of congress. On July 26, 1990 George HW Bush signed the Americans with Disabilities Act into law!

       After the passage of the ADA, the Titles to the law had to be implemented, and made effective. This occurred between the years of 1991 and 1994.  Title I of the ADA prohibits all employers who have 15 or more employees from discrimination against qualified people with disabilities in all aspects of employment. Aspects of employment include recruitment, hiring, training, bonuses, promotions, pay, and benefits. Both Title II and III require equal access for people with disabilities. However, Title II covers state and local governments, while Title III applies to private agencies. Title IV of the ADA requires that telephone services nationwide have telecommunication relay services, which allow those who are D/deaf as well as those who have speech impairments to communicate over the phone. Title IV also requires closed captions on the TV. 

       These laws are tumbling down. Decades of work for disability rights activists and advocates are being withdrawn. Businesses are not going to need to be ADA compliant, and people with disabilities are not going to be able to live in their communities. So, this Disability Pride Month we must celebrate how people with disabilities fought for our rights from the ground up. I ask you to join us in celebration and the next battle to come. 

A Letter To My Service Dog

Dear Cleo,

       Now that I have you, I can not imagine life without you. I searched far and wide for you, for a very long time. I knew I wanted a service dog, but in no way did I expect you.  My love. My girly girl. My dear, sweet, stubborn, "miniature” Labrador Retriever. This letter is for you, and how you changed my life. 

       Five years before you were born, I started my search for a service dog. I emailed, and applied to almost every service dog organization on the North American continent. You won’t believe what they told me! "You can’t be blind and use a wheelchair". Well, obviously you can, because I am! One of them told me "We can’t place a service dog with you because it might be falsely construed as a guide dog". I couldn't understand what was so wrong about training a dog to meet my needs. I mean, really?! You can definitely see how God put you in my life with what happens next. 

       I had found this organization that I hadn’t looked into yet, and I asked Nana to print out their application while she was at work that day. She didn’t come home with the right application. She came home with the application from Canine Partners for Life (CPL), where you were born. It is divine work because after not hearing from them, I threw the application in the trash. Nearly three months later I received an email saying if I applied they would train a dog to meet my needs. I applied within a week, and got put on the active waiting list! I waited for yo for two years!

       While I was at school one day, I received an email. The email said something along the lines of, "do you still need help with transfers? We have a dog for you, but she’s not big enough to help you with transfers." I didn’t reallly need help with transfers anyways, so that could wait, because I wanted you! On the way home from school I called the whole wide world to tell them I was matched with you! I could not contain my excitement! In order to take you home, though, I had to spend three grueling weeks in Pennsylvania to train with you. 

       Those three weeks were hard, and at first I had no clue how to handle you. It was three weeks of training me how to work with and train you, while also learning the laws. You know all this though. You were there. What was your first impression of me? Did you think that you were just getting passed around to someone else, or did you know that you were coming home? Did you love me, quiet voice and all? One of my fears is that I would be too quiet for you to hear my commands, but look where we are now. I guess you loved me from the beginning, too. I remember the first night that you came home with me. I undressed you and you ran all over the hotel room, sniffing every inch with your "big" nose. Then came bed time when you jumped on the bed, attacking me with kisses and I was the happiest Valerie in the world, smiling ear to ear and laughing. That night you found your spot right next to me on the bed, and I wonder why we bought a dog bed because we didn’t really need one! When it was time to go home to California, we just ended up donating the bed to the CPL kennel. 

       Then we had to brave the airport, and the plane. What I remember about the way home is the flight attendant telling me, "I can tell that she’s a real service dog, because she hasn’t moved the entire flight." We were a newbie team, but you were still the real deal! Here’s the part where you changed my life. There are some moments. Some instances. Some memories, that I would like to share. 

       Remember our first Christmas? I wanted that picture with Santa so bad! It was Eve of Christmas Eve when I finally got it. Santa… he seemed a little taken aback that he was taking a picture with a dog. I digress. Santa was not the point. 

       Along with Santa, the whole Crisci family came to Christmas. In prior Christmases with the entire family, I would get fatigued and my pain would get out of control. I would stop participating, and then get upset that everyone didn’t stop with me. Cleo, Christmas of 2016,  I did not stop! You told me when I was in pain.  You told me when I needed to slow down. I had fun! I bonded with my family! I had you! All of those past christmases, I needed you. That Christmas was one of the most fun Christmases I’ve had in a long time!

       The celebration of Christmas is celebrating the birth of Jesus Christ. You’ve learned that in church, haven’t you? I hope you have, or else you took communion for nothing. You embarrassed me because it wasn’t very “Service Dog” of you. I remember that Great Nana took my juice and cracker like always. She set the juice down in the cup holder and then you reached your little lizard tongue up to have a drink. On a separate occasion, as I was trying to put the cracker in my mouth it fell to the floor.  “Leave it” was never your strong suit, so you grabbed it off the floor as soon as you got the chance. But boy do I digress, you funny funny dog. 

       For a long while, the whole family went to church. But as time went on, Nana and Papa stopped going and stopped taking me. Then you came!I started waking up at the crack of dawn to catch the paratransit bus to church. For a while, I didn’t really realize that why I felt comfortable doing this was because of you. I knew that you were there to tell me if I was in pain, to pick up something I dropped, and to lead me to the place I needed to go. The MTS bus had always been an option, but it had never been a safe and comfortable option until you!

       You bring me so much joy! Along with you, though, came this whole new family. It started by making friends with the other teams in our class, then it… just, kind of, happened. There’s this group on Facebook of CPL graduates. Did you know that?! Now, I have my best friend, Nicole, and your long distance boyfriend, Cole in Pennsylvania. Remember when they came to visit us all the way here in California? That was a long flight for them!

       So, I have my "family" on the east coast, but it started getting boring for us here in California. You need to play. You need to train. I need fellow service dog parents. So, as I’m sure you already know, I started a Facebook group to find our local "family". I found them! Now, we go on monthly training meet ups, and have play dates. I hope you enjoy them! You always seem to have a smile after. Our meet ups have also been in some far out places and you help be there independently. 

       So, Cleo. My love.  My girly girl. My dear, sweet, stubborn, little Labrador Retriever. You have brought me so much joy! God definitely brought you into my life. You have brought me so much independence! You have brought me so many new friends that I wouldn’t have met otherwise. You are quite vocal, but I understand. If I was as smart as you I’d want to speak my mind, too. You learn new tasks like it’s nothing. I’m pretty sure you are as intelligent as a four-year-old human. With your smarts and help we will sail through any and all rough patches. When you learn how read, let his letter be the first literature you set your eyes on. 

I love you to heaven and back!

Your Mommy,

Valerie Crisci

More Than a Caregiver

Yesterday, I told my friend, "I think I've moved to acceptance in the stages of grieving."  She seemed baffled, like grieving is only for those who have died, but it's not.  You can grieve over the loss of a loved one, the loss of an ability, separation from a friend... or in this case, a friend moving away. 

I needed a new caregiver; that's all I was expecting.  That day, a girl from Santee, only one year older than me, came walking through the front door.  She showed up before the one she was supposed to shadow.  She walked through, seeing what my routine was, with what seemed like no fear.  I like that willingness to try everything and see what happens.  Barbie Johnson says she faked it until she made it.  She did a damn well good job.  How was I supposed to know we would blossom into sisters?

The routine starts with a shower.  Barbie transfers me onto the shower chair and slides me into the shower.  Then, with Barbie sitting on the toilet seat (fully clothed), we would talk about anything and everything.  I told my whole life's story during those conversations - and it's a long story.  That blossoming occurred in less than a year.  Now I'm grieving because she is leaving for five months. 

 I rely and put my whole life on her.  But it's time she lives her own life for a while.  We will text and communicate, at least every other day!  She will be back!   She has to, because we're sisters now!

I Know This Puzzle

I know this body.  It has been mine for soon-to-be 19 years now.  This body has not functioned properly for almost my whole life.  I understand that it hides the problems happening, but that does not mean that something wrong is not going on.  That does not mean that I do not know what's happening.  I am not crazy and I am not a hypochondriac.
       When I say my body likes to hide what's going on, I am not kidding.  Let me tell you a story that explains what I mean to a tee.
       I have had two back surgeries.  A spinal fusion, and a revision to that spinal fusion.  A spinal fusion is a procedure where the surgeon uses titanium rods, screws, and bone grafts to correct severe scoliosis.  A revision surgery is when they have to go back in to correct a previous surgery.  My spine is fused from T-3 all the way down to my pelvis.  While fusing my spine they discovered a broken vertebrae that had not shown up on any preoperative X-rays; it was hiding.  After my recovery I started experiencing a sharp, stabbing pain in my hip every time I took a step.  I was also experiencing a dull pain whenever pressure was placed on my back, like washing my back while showering.  We did multiple X-rays which didn't show anything.  The pain was not fading or going away, so we did a CT scan which didn't show anything either.  Finally, my surgeon decided to perform a revision surgery.  He didn't know what the cause of the pain was or what he was looking for; he went in blind.  What he found shocked him.  The screw in my hip was completely stripped from its place, I had two large abscesses, and another broken vertebrae.  My body was hiding it all from the X-rays and CT scans, but I knew something was wrong.  I knew it was more than just pain, and, my surgeon listened to me.
       I've been called crazy too.  I went to a pulmonalogist for trouble breathing and she told me to go see a psychiatrist.  Turns out I have 37% lung function and restrictive lung disease.  I know my body!
       My body hides its problems, but I am not crazy or a hypochondriac.  I know my body better than most.  Believe me when I tell you something is wrong!  Believe me when I tell you that it's more than what you think!  My body is a puzzle, but I know this puzzle as it physically makes up me.

(Images used from google are not owned by me)

Find Your Inner Strength!

A week or so ago I sent my friend a picture of neurons on my nails.  This friend of mine, one of my best friends has epilepsy.  Her seizures are not well controlled and, at this time, she is helping me go through seizures of my own.  I put brain neurons on my fingernails to help me deal with anxiously awaiting the results of an ambulatory EEG.  Every symptom I am having, though, points to seizures.  My best friend's symptoms and mine match perfectly; we understand each other in an amazing way.
       After complementing me on my nails, she told me that my nails are an excellent example of why people call me strong.  She said, "Instead of always thinking of how seizures stop you from doing everything you want to do (not that it should)- you celebrate who you are, physical querks and all."  Saying that not everyone has that kind of inner strength and by having neurons painted on my nails, I am embracing who I am.  It seemed so trivial to me.  I mean, it's only nail art, right?  Wrong!
       I am exhausted, and scared, but apparently I do well at not showIng it.  I am told I live with a reason to smile, and I'm glad because I try my very best to do just that!  Everyday my service dog, Cleo, makes me smile, my cat showing his little attitude off makes me smile, my nail art makes me smile, and my best friend, Nicole, makes me smile!  Nicole said, "You still live with purpose. And that shows AMAZING inner strength.  You have drive to be a part of society.
There's a difference between acting on our fears and exhaustion.  Though you feel those things, you get out of bed and face the day."
       The lesson here is... figure out how to deal with the toughest of things.  Find something to smile about each day.  Something as simple as your animals or as big as achieving the greatest goal.  It is okay to not feel good, it is okay to be dained of energy, it is okay to be having a hard time, just try... and smile!  Find your inner strength!