Parenting Series: How One’s Perspective Can Change Given The Right Circumstances

Happy Taco Tuesday everyone! Thank you for the continued support you have shown over the past few weeks. Today will be the third in a series about parenting with a disability. I did not intend for this topic to be a series of blogs but the topic keeps finding relevance in my life and I hope to continue to impact others as well. 

I began writing about parenting with a disability a decade ago. The first blog was entitled "Who Says We Can't Have A Family". Who Says We Can't Have A Family  Two years later I wrote a second blog entitled “Parenthood & Me”. Parenthood & Me 

If you read both blogs, you may be a little confused. I sound like a rolling contradiction (: Both of these blogs were written while I was single as a pringle. In the first blog, I had a positive outlook on having a biological child. In the second blog, I said something to the effect of after thinking about it I would be doing a disservice to a young child, and I stated that I thought it would be more appropriate if I adopted an older child. Well, eight years have passed since I wrote the second blog and by some strange facet of the universe, or as I like to call it God’s Divine Plan, I am no longer single as a pringle. I have been lucky enough to capture a little space alien named Samantha “Elizabeth” Lebron. Her middle name is not actually Elizabeth. I just gave it to her because she looks just as beautiful as Elizabeth Taylor. (I know Samantha you hate your imposed middle name, but oh well I guess you will have to give me one soon.) Back to my point.  A lot has changed. I now have someone I want to build a life with and hopefully have a child or multiple children with. With that in mind my views on children haven’t changed; they have just gained some perspective. While I continue to believe adoption is still an option, and there a lot of kids out there who need a good home regardless of whether they are disabled or not, my desire to have biological children is stronger now than it has ever been. 

In closing in the first blog, I said that I did not know much about assistive technology for taking care of a child when you are a parent that has a disability. Since the purpose of this blog serves as a resource for everyone as well as to inform people about what living with a disability entails, I plan on researching assistive devices and equipment further and will be writing a fourth blog on parenting with a disability in the future.

Enjoy your Taco Tuesday and come back tomorrow for another interesting blog post from The Voiceless Minority.  

P.S. If anyone has any ideas for upcoming blog posts or wants to be a guest writer please leave a comment below or contact me via email at jasonhahr@gmail.com

Your Friendly Neighborhood Super Advocate, 

Jay  

Florida SAND 2023 REUNITED CONFERENCE RE-ENERGIZES My passion and PROVIDES much needed SPARK For Advocacy

They say things happen for a reason. They also say for those of us who are religious that God has a way of providing exactly what you need when you need it, even if you don’t know you need it. I am living proof that this statement is true. In the following piece, you will learn that one event, no matter how small or big, has the power to change you if you allow God to implement his plan in your life.

For those of my readers who don't know, I am beginning the second year of my fellowship with an organization known as Florida Self-Advocates Network’D (FLORIDA SAND). They are a nonprofit, organization made up of 15 self-advocacy groups throughout the state. The organization aims to amplify the voices of individuals with Intellectual and Developmental Disabilities (IDD) on a local, state, and federal level.  According to their website, their mission is… FL SAND is an independent 501(c)(3) organization formed to expand the self-advocacy movement in Florida. It works through the support of local grassroots efforts, legislative platforms, networking with local businesses and civic communities, raising awareness, and promoting inclusion for all. FL SAND provides a united voice on statewide issues and topics that are important to self-advocates and all persons with developmental disabilities throughout the state. 

As a part of my fellowship, I am contractually obligated to plan conferences. As well as self-advocacy training, I am also required to develop an educational curriculum that focuses on self-advocacy. About six months into my fellowship, I started to develop negative feelings toward the whole program. I started treating it like a job that I could not wait to leave, instead of a job I was passionate about. I began to get lazy, purposely waiting until the last minute to complete assignments, however, that all changed after a conversation with one of my best friends who happens to be my sister. 

One night a couple of weeks ago I called my sister intending to just talk about her upcoming baby shower. Yes, I will be an uncle on or before October 12th and I am so excited to get to spend time with my first niece and show her that dinosaurs still exist, lol. Now back to what I was saying. My mom planned a baby shower for my sister during the weekend of August 18th through the 20th. She said she was extremely excited however, soon the conversation turned to me because during the same weekend that she was to have her baby shower, I was to attend the Florida SAND Reunited Conference. As a part of my fellowship, I had to speak at the conference with my colleagues. We were required to give a presentation on what is known as Route to Self-Determination. In short, the presentation centered around the concept of being in control of your life regardless of whether you have a disability or not. When my sister asked me if I was excited to give the presentation and have our dad see me at work, I responded with something like I feel like a fraud… I can’t wait for it to be over. Before she responded to my comment, I was in my head and I believed that I was not living the concept I was supposed to teach. She explained to me that although I am not living the concept 100 percent right now, I am missing the point. Self-determination is about having the ability to live with a disability and also to live the life you want with the proper supports. I was not seeing it this way and instead harping on the part of the concept regarding living life the way you want. I was leaving out a crucial part of the concept ie; the first principle of self-determination having the supports you need and making sure they are the way you want them to be. 

As a result of this reality check, I went into the conference with a positive attitude and I believe this is why God put me at that conference, he knew I was looking for direction in my life and he also knew that I already had it, I just wasn’t paying attention to the signs. Long-time readers of this blog will remember that I have another blog entitled “The Modern Day Moderate”. I have also mentioned that I was a founding member of an organization known as “Access The Vote” which was started by Disability Rights Florida.  Sadly, because of my negative attitude as of late, I stepped away from the organization, however, God figuratively smacked me in the face, and told me I needed to get back involved with the organization when he orchestrated a conversation between me and my friend Laura-Lee Minutello who works at Disability Rights Florida as a part of Access The Vote. She presented me with an opportunity to rejoin the organization and I could not pass it up. I will be attending their upcoming voting summit on Wednesday, September 13th.

Along with the conversation with Laura, the presentation I gave was extremely well received. I am so proud of my fellow fellows for all the hard work and preparation we put into this conference. Thank you for allowing me to be a small part of the team. Even though we experienced ups and downs along the way I think we were exactly the right group of people to give said presentation. I have learned a lot from every one of you. As an added plus I got to spend the weekend and work with my awesome girlfriend Sam. I could not have asked for a better weekend. I also would like to thank Rick Patterson for his tremendous hard work and understanding while not only taking care of me but my dad as well. Thanks, dude, even though we butt heads occasionally I know you are a true friend. 

As a final thought, I want to thank our keynote speaker Matthew Walzer, your speech was inspiring. Don’t worry, I am not going to step on your proverbial shoes and join the athletic wear game. But you have inspired me to write to companies and see if they can create an accessible dress shoe and suit. Thank you for the inspiration.

Okay so I lied, I wasn’t done. The conference inspired me to do what my dad told me I should do when I was in eighth grade. Anyone who knows me knows that I’m good at several things including trivia, comedy, and sarcasm, however, I am as some people say an expert at arguing. I have decided to combine this with my advocacy work and pursue my law degree. I plan on focusing on public policy and civil rights.  After obtaining my degree I will continue to fight for the rights of people with disabilities and underserved minorities so that we can move one step closer to an equal society for all.

Seriously, I’m done this time. Thanks for reading. Sorry for being so long-winded but as the title says, I am newly inspired and felt I had to let everyone know how awesome the 2023 Florida Sand “Reunited Conference” was. 

Until next time…

Jay

Disability Is A Mindset Not A Diagnosis

Your friendly neighborhood super advocate is back! Since I last posted a lot of things have happened in terms of disability related issues and content. This post is the first of several posts to come. They will discuss a wide variety of topics including dating and relationships as well as finances and the low expectations society still has for people with disabilities. 

Today’s post will highlight a recent encounter that I had at Wal-Mart. The encounter reinforces the idea that there is still a narrow view of disability in society. Let me set the scene.  

As I often do, I was shopping at my local Wal-Mart a couple weeks ago. Most of the time I go in to the store with my caregiver or I pick up the groceries I have preordered. On this day, I did not go in, instead I decided since I only had a few things to pick up I would have my caregiver run in for me. As most of you know, I currently live in Florida. The weather in Florida often fluctuates between warm and extremely hot in the spring and summer. Rather than waste gas and run the car, my aide and I decided that she would leave the windows down for me. Wal-Mart must have been particularly crowded on this day because it took longer than usual.

While I was listening to music and waiting for my caregiver, an African American gentleman stopped one of the Wal Mart employees who was gathering carts in the parking lot and loudly made the following comment while pointing at my van. “Look at that autistic kid. I don’t think he knows they left him in the car. This is abuse. You should call the cops. It is too f-ing hot”. As this interaction was taking place my first thought was to react with anger. I actually said out loud I do not have fucking autism”. I then thought to myself why are you getting angry? This is typical. After a few seconds I realized if the guy came over, I could use his comment as a teaching moment. Eventually he did approach the vehicle, and proceeded to ask me in a patronizing way if I was okay. Before I responded I took a few seconds to compose myself. 

After reassuring the gentleman that I indeed was okay, I proceeded to inform him that I did not have autism and not all people with disabilities are autistic. He must have been taken aback by my response because all he said was “Oh, glad you are okay. Have a good day”. Once my caregiver got back in the car, I told her the story and we immediately started laughing about it. It was not until later when I told my girlfriend who has the same disability that I do, that she suggested I write this blog. The reason I took a couple weeks to write this blog was because I was having trouble figuring out whether there was a larger lesson that I could expand upon because of this encounter. It was not until last Sunday that the lesson became clear. 

I had not thought about the ignorant comment for a few weeks, and it did not enter my mind until a different caregiver of mine was having a conversation with his friends, and they were surprised that people with disabilities could go bowling. The two incidents made me realize that there is a larger concept that most of the able-bodied community does not yet grasp.

Even though we are in the third decade of the 21st Century and a lot of improvement has been made in the lives of people with disabilities, there is still a level of ignorance and lack of awareness when it comes to disability throughout mainstream society. People either patronize people with disabilities or assume certain things about people with disabilities instead of getting to know us as individuals. If we are ever going to change this, people with disabilities need to be more assertive and this may be controversial but stop feeding into the idea that the majority of society holds.  Most of the able-bodied community assumes that disability equals low expectations. The disabled community further perpetuates this idea when they don’t have high expectations for themselves or each other. 

The statements made in this blog reflect my own beliefs and do not reflect the beliefs of any other individual with a disability. I am not sure how the disabled community will react to this blog as a whole, but it is my hope that all who read this blog will be left with something to think about. People should be judged by what they do, and the impact they make on the world. It is up to all of us to not only be good people but not give others a reason to look down upon us regardless of whether or not we have a disability.

I know this post is longer than usual but I believe it was necessary and just the right length. 

‘Til next time, your friendly neighborhood super advocate,

Jay