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  

Finding Your Faith Again

Happy Labor Day everyone! I hope you all had a great weekend and enjoyed what you read on the Voiceless Minority last week. I know in Friday’s post I said that the next blog would be about the topic of when the right time to teach your children about a disability is, however, there’s something that came up over the weekend that has made me decide to move that blog until later into the week.

I mentioned a little about how my faith journey was rekindled in Thursday’s post but as God often does He puts us right where we need to be and to hear the exact word we need to when we need it. On Sunday I was watching church online with Sam. The church is called The Crossing and is located in Tampa. I wish I could go to services in person but the online service will have to do for now.

As I have mentioned several times before I was raised Catholic and for the longest time I considered myself a recovering Catholic, not because I did not believe that Jesus was the Messiah, (I never stopped believing that) but because I was disenchanted with the practices of the Catholic church I felt, and this is just my own personal belief that the church did not resonate with me and they were concerned too much about making a profit. I have tried to get back into organized religion on one other occasion. I found a church where I was going to school in Pennsylvania that was nondenominational where I found a “home” for the first time. I did not feel like I was faking it. Unfortunately, due to circumstances that I have discussed in other blogs for this page, I chose to relocate with my parents and move to Florida.

Once I got to Florida you can say that the world or if you like the devil got into my head. I became really depressed, negative, and disconnected from God. At my lowest point, I was ready to forget all about the higher power or as I believe Jesus and why he put me here to live the life I live. That all changed about two months ago when my girlfriend Samantha started getting involved in her faith journey. She has gone down the path of faith since January but really hit her stride two months ago when she told me about the Crossing Church. She had been attending and she also told me they had services online. I’ve only attended two but immediately I was struck by the message that the minister was preaching that day, however, it wasn’t until last Sunday that I knew this was exactly what I’d been looking for. 

He did a Sermon on communication and relationships with others as well as going over the church’s principles he explained that in every church no matter what denomination as long as they believe in Jesus the core message is the same but he referred to each church as a part of the body of Christ. He simplified it by saying each church is like an organ in the body. They have their specific assignment meaning that the Crossing mission may be different than another church’s but they all work together to support the whole body. After explaining this he outlined the principles of the Crossing and related them back to specific passages in scripture. I will attach the message notes at the bottom of this blog so that if you choose to you can read them for yourself.

In closing, one’s faith journey might look different than someone else’s but God gives us exactly what we need to progress further in that journey even if we don’t know that we need it. No one is perfect and by no means do I consider myself perfect. We were all born into sin the only way we will find redemption is through Jesus.

Sorry, this post wasn’t strictly about people with disabilities but as I said earlier in this post God speaks through us, we just have to listen. Some people with disabilities may be down like I was but remember attitude is altitude and He will help you go further than anyone or anything.

Till tomorrow this has been your friendly neighborhood super advocate.

Jay

     

An Introduction To The Concept of Self-Determination and How It Can Be Applied In Your Life

Thank you for your overwhelming support of yesterday's blog about Braille Legos. Today's post will be a little bit different. Near the end of August, I was lucky enough to be a part of a team that gave a presentation on what is known as self-determination. For those of you who are reading this but were unable to attend the presentation I thought I would write a blog using easy-to-understand language about the concept.

Introduction:

In the journey towards creating an inclusive society, the Robert Wood Johnson Foundation’s principles of self-determination serve as strong examples of empowerment. These principles emphasize the significance of autonomy, choice, and personal growth for individuals with disabilities. Let’s delve into the essence of self-determination and explore its profound impact on the lives of people with disabilities.

Understanding Self-Determination: 

At its core, self-determination encompasses the idea that individuals with disabilities have the right to make choices about their own lives and actively participate in decisions that affect them. This concept champions the belief that everyone, regardless of ability, possesses the innate capability to lead a fulfilling life and pursue their aspirations.

Principle 1: Freedom to Make Choices:

The first principle underscores the freedom we have to make choices according to our preferences, interests, and values. This freedom extends beyond trivial decisions to encompass major life choices, such as education, career, relationships, and living arrangements. Recognizing and respecting these choices helps foster a sense of ownership over one’s life journey.

Principle 2: Authority Over Supports:

Having authority over the types of support and assistance we receive is pivotal for us. This principle acknowledges that each person’s needs and goals are unique, and thus, we should have the power to determine the kind of support that aligns with our aspirations. This approach shifts the focus from a “one size fits all” approach to a personalized, tailored support system. 

Principle 3: Control Over Resources:

Financial independence and control over resources play a significant role in self-determination. Individuals with disabilities should have access to information about available resources and the autonomy to manage their finances. This empowerment helps us plan for our futures and make informed decisions that positively impact our lives.

Principle 4: Opportunities to Learn and Grow:

Continuous learning and personal growth are fundamental to leading a self-determined life. This principle emphasizes providing individuals with disabilities equal opportunities for education, skill development, and vocational training. These avenues not only enhance our abilities but also amplify our voices and allow us to gain confidence and realize our full potential.

Principle 5: Participate in Community Life:

Inclusion within the community is a cornerstone of self-determination. Individuals with disabilities should have the chance to actively engage in social, recreational, and cultural activities, just like everyone else. This principle dismantles barriers and encourages the forging of meaningful connections to lead a rich and fulfilling life. It is only by self-growth and by developing who you are as a person, whether it is in the disability community or otherwise, that you can move onto the final principle which is all about giving back.

Principle 6: The Ability to Give Back to the Disability Community and Advocate for the Rights of People with Disabilities:

In my presentation, I only use 5 principles, but the sixth principle is otherwise known as confirmation. Once you are living the other five principles to the best of your ability it is your responsibility to give back and complete the circle of learning. As people with disabilities, we have a responsibility to learn about our rights and once we have done so, it is our job to pass that knowledge along to future generations of advocates. This could be done in a variety of ways through presentations like the one I gave at the conference, through blogs like this one, or even taking advantage of the times and posting videos on social media.

In conclusion, the principles discussed above if applied correctly, will help us on the path to personal empowerment. Once we empower ourselves and gain confidence in ourselves, we can push for societal change to break down barriers, challenge systematic and societal biases as well and create an environment no matter if you have a disability or not where your dreams and aspirations are honored and supported. If this occurs even in the long term, we will have built a more inclusive and compassionate society.

Thank you for your overwhelming support of this blog. I hope you have an enjoyable weekend. Now I know Monday is Labor Day but advocacy doesn't take holidays therefore neither does The Voiceless Minority. Come back on Monday to not only support the workers of America but start the back-to-school season with a blog that raises an important but not often asked question. "When is the right time to start teaching my kids about disabilities?"

Your Friendly Neighborhood Super Advocate, 
Jay

Lego Strives To Make Play Accessible for All: Braille Legos Soon To Be Available In The U.S

Mostly everyone, regardless of their age, is familiar with Legos. Some were obsessed with them as a child, owning every kit and every expansion set; however, some may be unfamiliar with what exactly a Lego is. According to their website, Legos are a series of interlocking plastic blocks that can be assembled to form buildings, characters, vehicles, and other objects.

 

The Lego company was founded by Ole Kirk Christiansen in 1949. Since Lego’s founding, the company has always been at the forefront of the latest trends, whether it’s a hit movie, TV show, or, more recently, the concept of inclusion and universal design.

 Words

You may ask, what is universal design? According to the University of Washington, universal design is the process of creating products accessible to people with a wide range of abilities, disabilities, and other characteristics. Now that we understand the universal design (UD) concept, we can apply it to a new product that the Lego company unveiled in the U.S. on September 1^st of this year. The new innovative product is a Braille Lego Kit. Once it hits the market this Friday, it will bring the world of Legos and basic education to children with visual impairments.

 

The Braille Legos are not a new concept. They are just new to the U.S. market. The idea was first introduced in the U.K. in 2020. The idea behind the UK products was to make them available in educational settings only. The original kits came with 300 pieces with markings corresponding to each Braille alphabet letter. These blocks were originally designed for children between the ages of one and four. However, the researchers quickly saw the product's potential with other groups.

 

After three years of perfecting the product, the Lego Braille blocks will officially go on sale in the US tomorrow. They will retail for approximately $89. This time, the kits will include 226 pieces with the Braille markings on one side and the English equivalent of either a letter or number on the other side so that those who are assisting can easily use the product.

 

In closing, there is no doubt that the steps the Lego company has taken to include a segment of the disability community should be commended. However, although this blog focused on individuals who either have low vision or are blind, I make it my mission to research whether there are other adaptive toys for other segments of the disability community. If anyone reading this can point me in the right direction, I ask that you either leave a comment on this blog with your contact information or email me at jasonhahr@gmail.com. Let’s all use the fourth principle of self-determination, which is responsibility, and remember that we all should give back whenever we can.

 

Thank you for reading this post. I hope you enjoyed it, along with the other recent posts on this blog. Don’t forget to come back tomorrow for a more comprehensive explanation of self-determination.

 

Your friendly neighborhood super advocate

 

Jay

Florida SAND Fellowship Year One: A Review of How My Advocacy Has Benefited From My Fellowship

Hello again everyone. I hope everyone enjoyed yesterday’s blog on adaptive cooking and cookware. As my fellowship is coming to the end of the contract for my first year tomorrow, I felt it would be appropriate to give a nod to not only Florida SAND but my colleagues and the staff who trained us throughout this past year to thank them for helping my passion for advocacy grow. 

I came into this fellowship at a weird time in my life. Before the fellowship, I had worked for Florida SAND as a per diem writer for their blog FSA Central. While this work kept the flame for disability advocacy alive and on life support, when I was presented with the opportunity to be a fellow, I immediately jumped at it. Thank you to Kelli Munn for the opportunity.  I would not be where I am today without your faith in me. However, my fellowship wasn’t as smooth of a journey as I had hoped. 

About a month into the fellowship, I began to take it for granted. I had an ego bigger than the state of Florida and I thought that I knew everything there was to know about self-advocacy; boy was I wrong! I quickly learned that there was more to this fellowship than just writing articles about people with disabilities. Thanks to the fellowship I would develop event planning skills and meet my best friend, although I did not know it at the time.  We spent the first few months of the fellowship planning a conference where we would teach a concept that I have spoken about before on this blog, “The Route To Self Determination”. At the time I did not realize how this conference would change my life forever. Along with my colleagues, Laura Lee-Minutello and Samantha Lebron we had to give a full-day presentation on the concepts of Route. It was both an eye-opening experience as well as a learning opportunity and as I’ve said before, it was where I dared to hit Samantha with the following cheesy line that would change my life forever.  

Hey, “would you be my scribe for the weekend?”. I don’t know why the hell she said yes but she did. I will not go into further detail about how we have built a relationship in this blog as it is not relevant to my main point. After that weekend I started to see that my passion for disability advocacy was not as strong as others were. Over the next six or seven months it would decline and eventually, in an unforeseen way, it would reach an all-time low. The fellowship quickly became something I took for granted. 

I was given so many opportunities to better the lives of other self-advocates but unfortunately, I did not take advantage of them. Granted, I spent some time dealing with health issues but I did not use my hospital stay to re-energize, instead, I would use it in a negative way and sadly become complacent. However, that all changed a few weeks ago. 

About four months ago we started planning this year’s conference where we would give a condensed version of the presentation we had given the year before. I tried to use this to remotivate myself but it wasn’t until I attended the conference and heard its keynote speaker Matthew Walzer that my attitude changed in a positive direction. Without retelling Matthew’s story, as I have mentioned in previous blogs, I will say that his speech changed my life and my overall outlook on not only my fellowship but my life in general. 

I now understand how things happen for a reason but at the same time, we cannot use negative events in our lives as excuses or crutches to explain away our laziness or lack of effort. Thanks to the fellowship and the speech I heard at the second conference, it became a part of my advocacy work and my enthusiasm has intensified one thousand percent. I now post on The Voiceless Minority anywhere from four to five times a week. This is significant because excluding the first two years in which I started the blog, I only posted on it sporadically. 

As a final thought, just because you start to feel overwhelmed or negative about a particular job or situation you are in, remember that you are the only one who can change the way you feel. Recently I wrote a blog on how attitude is altitude, and it is this principle that is most appropriate to end this blog. In other words, just because there was a period in time where I had negative feelings toward the program, this does not mean that I could not have chosen to deal with them positively.  Negativity is only a feeling; it is only as powerful as we allow it to be. Instead of letting the quality of my work show how I was feeling at the time, I believe God was testing me and unfortunately, I did not pass his test. But you learn from your mistakes and learned I have. 

Whatever you are facing, there is always a way to put a positive spin on it so that you come out of a situation better than before you encountered it. This writer’s humble opinion. Until tomorrow, stay strong. 

Jay

Finding Your Way Around The Kitchen: How Adaptive Utensils Make Cooking Accessible For All

Before I begin, I wanted to say thank you for your overwhelming support of my recent posts. I hope you enjoyed yesterday’s blog on how to have a healthy relationship. Now let’s take a detour and begin today’s post. 

The first thing I want to say is, Happy Taco Tuesday everyone! If you have not guessed this blog is going to be about food and how people with disabilities can be included in one of America’s favorite hobbies, the art of homemade cooking. I know everyone except the really brainy people, the ones who majored in math in college, and hated statistics but here comes one anyway.

According to a poll conducted on behalf of Hello Fresh nearly one-third of Americans still believe it is better to eat in than go out because the quality of food is better. In that same poll, it was reported that 69% of Americans cook on a regular basis, an estimated 10 meals per week. 

Some of you who are reading this may question the validity of this poll and may be wondering what exactly is Hello Fresh. According to their website, Hello Fresh is a meal-kit delivery service with four basic plans depending on your dietary and food preferences. 

If we consider the Hello Fresh poll to be accurate or close to it, then we can logically come to the conclusion that cooking is a highly enjoyable pastime in America. The question can be asked then, how do we make cooking accessible for all? 

Fear not, this blog will attempt to give you, the reader, tips and suggestions on how you can make any basic kitchen accessible for all. To begin, let’s look at why home appliances were created in the first place. I believe Appliance Journal puts it best, “Home appliances were designed to make our lives easier. The cool thing is appliances aren’t a one-size-fits-all all solution. Home appliances come in many different shapes and sizes, there’s something out there for everyone. Preparing meals from a wheelchair is possible with a wide selection of ADA-compliant appliances.” The article goes on to further explain that ADA-compliant kitchens are becoming more popular for three essential reasons. 

1. There has been a significant increase in multigenerational households.

2. People with disabilities are now aging in place rather than going to a facility or an institution. 

3. There has been an increase in the belief that society should be more inclusive for all.

An article written in 2021 by Hadriana Lowenkron reinforces the idea that universal design not only benefits people with disabilities but society as well. 

Let’s look more at the above-mentioned journal. The Appliance Journal has comprised a list of accessible kitchen items that I believe will benefit everyone. 

The first thing they discussed was the height of the kitchen counters. They pointed out that most kitchen counters are 36 inches. They then mentioned how a universally designed home or residence typically has 34 inch countertops. This is useful for somebody like myself because my wheelchair would be able to fit under the counter more easily. After talking about the height of counters the next logical discussion would be to talk about some accessible appliances.

Rather than just regurgitate what the article said about these appliances, I have linked an article here:

https://www.ajmadison.com/learn/appliances/buying-guide/the-best-wheelchair-accessible-kitchen-appliances/

Once you have made your kitchen accessible you can take the next step to make cooking accessible for all. Now we will focus on some adaptive cookware and utensils that may be useful in the actual cooking process. 

The cooking process is fun for most people and if you have a disability, it can be as well. In doing research for this blog, I not only learned about adaptive spoons and silverware as well as straws which I already know a little about, but I also learned about cool utensils such as self-opening kitchen shears ie, scissors for cutting food for when you are preparing it. There is a whole slew of utensils I found on the website below.

https://www.thewrightstuff.com/adapted-kitchen-aids.html. 

In closing, cooking is not only a way to stay healthy, but it can be very therapeutic and relaxing, and given the right equipment, people with disabilities can now cook just like, and dare I say it, sometimes even better than their able-bodied counterparts. 

Well, dinner is done so I am about to go enjoy some of my favorite food, as today is Taco Tuesday!

Your Friendly Neighborhood Super Advocate,

Jay

How To Have a Healthy and Long Lasting Relationship With Your Significant Other

Hello again, I hope that everyone who is reading this had a great weekend and enjoyed the posts from last week. 

On Friday, I wrote about privacy and setting boundaries when you have a disability. This post will examine boundaries also but this time from a different angle. In this piece, we will look at the idea that some people with disabilities tend to rarely find themselves in long-term relationships, because of their inexperience with romantic relationships sometimes they end up unknowingly losing themselves in the relationship and neglecting other parts of their life.  This piece will provide some helpful tips to ensure that any romantic relationship you have as well as the other relationships in your life are balanced.  

Anyone who either knows me or reads this blog regularly will be aware of the fact that I am now in a relationship with a little alien by the name of Samantha. What you may not know is Samantha is the first disabled person I have dated and my first long-term relationship since I was 18. My previous relationship lasted a few months so some might not even call it a long-term relationship. Either way, my relationship with Sam is the longest relationship I have had.  We have only been dating for a little over a year but it has been a wild ride in a very good way. I believe until recently we were still in the honeymoon phase, or at least I was.  This is not to say that we are still not learning about each other and growing together as a couple. 

For the first 13 months or so of our relationship, we would call each other every time we got a break in our day, and this was immensely enjoyable but for my part, it eventually turned into a routine rather than a vibrant conversation with someone I love where we had things to share with each other. That all changed after a conversation a couple months ago. 

One night instead of being nerds and reading the fourth Harry Potter which we have been doing for months…will we ever finish it? I’m hoping so but I will let you know when we do. Anyway, back to my point. One night the topic of our relationship came up. As I said on Friday, when you have people constantly around you, they observe certain things even if you do not know it or want them to. In our conversation, it came out that people in our lives were making comments about our relationship, and at the time I thought they were unfounded. However, looking back, maybe these comments were wiser than I realized. To summarize, many people said we both, but for the most part, I had changed. Upon hearing these comments, I immediately jumped the gun and reacted negatively. 

According to some, they felt that I was consumed with Sam. After taking a breath, Sam calmed me down. She made me realize that perhaps because I have not been in a long-term relationship I was going in full throttle, perhaps even a little too much. It’s funny how people closest to you give the best advice but they are the last ones we listen to. Anyway, as a result of that conversation Sam and I now talk once or twice a day so that we have something to talk about at the end of the day.

I found that our conversations were richer and not as forced as they were when we talked constantly. I am thankful for that. An added benefit of the change in communication style between the two of us is my personal growth. 

I am now developing better relationships with close friends, taking time for family and caregivers, and even getting back in touch with my spiritual side. I was raised Catholic but have drifted away from the Christian church, or for that matter, religion in general. Since I have been in a relationship with my alien, my faith has been reawakened, and I am slowly building upon it. For that, I must thank Sam. Even though I have been surrounded by religion my entire life, when you are forced or constantly reminded to find faith you quit looking for it but when faith finds you this is truly the way a relationship with God is supposed to develop. 

Along with my faith journey, since I have changed the communication style in my relationship, I have paid more attention to the opportunities life is providing me. Recently I have found a new passion for self-advocacy and as I mentioned last week, I have found my true purpose in life. On that topic, my sister pointed out to me that something I said in my blog post last Tuesday might have been misunderstood. 

In the blog, I wrote last Tuesday I mentioned it is my new passion to obtain a law degree in public policy and become a civil rights/public policy attorney. After talking to my sister, I realized that it may have sounded as if I was going to immediately pursue that goal and forget about everything else. The opposite is true. That is my end goal. For those who are curious to know I have a plan of action to get me to that eventual goal. In short, next March I intend to apply for a six-month program in which I will learn how to advocate for different legislative policies that affect people with disabilities in depth. Hopefully, this program will provide me with a foundation for my future goals.

In conclusion, in order to have a healthy fruitful, and most of all lasting relationship with a significant other I have learned that there is one key factor. This simply comes down to personal growth i.e.: having a life apart from your partner so that you can come together as a couple and enrich each other’s lives and grow together. 

I hope you have enjoyed this little bit of relationship advice from someone who is still learning. Having said that, please note the above blog and the advice given in it is just that. You don’t have to agree with what I said at all; if you do that’s great, if you don’t I respect that as well. Anyway, until tomorrow, I hope you have a good rest of the rest of your day.

Jay