The Advocacy Life Podcast & Blog

Tag: Disability Awareness

  • My First Dance

    My First Dance

    Greetings wonderful friends, I hope everyone had a wonderful Thanksgiving. If you’ve been paying attention  You noticed that last Wednesday was the first week I did not post any content Since I relaunched the website in March 2021. I know this is not a big deal for some people, but  I like the idea of making one person smile every week with one of my posts. I speak for my writing team and myself when I say we are thankful for every person Who took a little time out of their day just to spend it with us.

    For this post, I want to share a very special anecdote that happened to me Just a few days ago. I usually post stuff that I write a few weeks in advance. This time I had to make an exception. When you have a condition like mine (Cerebral Palsy.) The only way to stop your body from deteriorating Is to undergo physical and occupational therapy. insurance will only pay for so much during one year in the United States.

     So I spread the sessions out as much as possible over a year. As with any kind of exercise, it is difficult to see results when we are dealing with The daily hustle and bustle of life. Measuring body fat and muscle mass is not how I determine results. this year I was focusing on three things. Sitting balance, standing tolerance, and using my left arm for more functional activities.  Here are some of my final statistics for 2022.  I can now hold a water bottle with my left arm unscrew the top with my right hand and take a drink. I can now sit up unassisted for 5 minutes and 28 seconds without falling over. I can stand with someone stabilizing me for 4 minutes and 38 seconds without falling over. I’m not bragging those puny numbers are not the best part of the story.

    Jesus gave me a Christmas present early this year! If you read any of my past publish works You will know that one of my dreams is always been to dance with a pretty girl standing up. on the last session of the year, I was getting ready to do my standing tolerance When the hit song Despacito came on the Alexa. I know the Holy Spirit was behind it! First of all, They usually don’t play any music at all. If they do it’s Something soft. It’s never anything to dance to. I sarcastically mentioned the song Despacito in my book. True, there was nothing romantic going on between my physical therapist and me. The moment was still fantastic! When I started dancing she thought I was crazy. This is the first time I ever danced! 

    After the song was done I went back to my chair. Went back to the waiting room like nothing ever happened. As I turn the corner to sit in the waiting room I overheard the receptionist saying “ You’re exactly where God wants you to be. You are right in his hand.”

     She was helping someone else who was having a moment of doubt. It couldn’t be scripted better in a movie. That moment was perfect. That night When I reflected on what I had done. I cried as I thanked God over and over again. 

    He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.

    Ecclesiastes 3:11 NIV

    When people think of miracles they want the seas to part or see money fall from the sky. That’s not how God sees things. We don’t see the world from his point of view we only see it from our limited vantage point. Most miracles take time. Has anything worth doing ever come easy? I discovered faith in Jesus Christ only 2 years ago. I might not be running a marathon anytime soon, but I will never forget my first dance. God does exist. Miracles do happen. most importantly, faith does work. Look inside your heart and talk to God he’s not that far away. See you guys soon have a good day.

    Special Announcement:

    Every TV show always takes a little break at the end of the season this post Is my version of a season finale. I will be back with new blogs in February 2023. I will still be producing content on all my social media Please follow me on Twitter, Facebook, etc for any major updates. I would like to officially announce I’m taking this small break to finish the first draft of my next book. Please subscribe to this blog as other members of my writing team may still want to publish blogs before the end of the year. On behalf of David, Jesse, Nick, and myself. We would like to wish you the very happiest of holidays and a prosperous New Year!

  • Guess Who’s Writing

    Greetings friends, I hope everyone is enjoying the peak fall season. As you know my name is Kevin. I started This blog as a pet project. little by little and with the grace of God. it took off. I wanted to create a space where people with disabilities could write and share their own stories. I am overjoyed to say I now have an official writing team. Please let me introduce you to them. You will notice that my introduction is the longest not because of vanity I just never expected to have anyone else on the website. I will be crafting a new one soon. I will also be adding archives very soon so you can keep up to date with all the writings. God bless you.

    Note: The authors of this page write of their own free will. They receive No monetary compensation. Any opinions expressed are theirs alone.

    David Champignon
    David Champignon

    Mr. David Champignon is a Political Science major from Edinboro University and a graduate of the New Jersey Partners in Policymaking Program. He is a proven leader and staunch advocate for people with disabilities. He currently lives with his wife Jenny in Sayre Pennsylvania. Alongside their dogs and cats, they are living proof that nothing is impossible. His experience blogging and semi-published works make him a perfect candidate to start this project with. 

    Kevin G. Nuñez Head Writer

    Hello and welcome to my blog. I am happy you chose to spend a little bit of your time with me. I’ve been wanting to do this for some time now. Please allow me to introduce myself and what I want to do with this website. A lot of people click the follow button without ever reading the about me page.

    The short answer is I’m a follower of Jesus with a smart-aleck mouth. Who advocates for people and families living with developmental disabilities. In New Jersey. At the moment of writing this, I’m a 34-year-old man living with Cerebral Palsy. It’s a neurological impairment. It affects the connection between my spine and my brain. I use a wheelchair as my main tool for Independence. I still have to depend on others to do basic tasks. like using the bathroom, getting dressed, and transferring in and out of my wheelchair. I was able to attend a public school and College. Only my physical body is affected by this disability, not my mind and heart.

    Let’s begin with my Foundation Jesus and spiritual growth. As a child, my family made sure I always attended church. So, I always believed in god but over the years I struggled and forgot to establish my connection. it’s hard to feel a Divine spark sometimes when society can make you feel less than others. forget about being picked last to play sports I couldn’t even play kickball at recess. my support person would kick the ball for me. girls have run away from me when I tried to ask them out.

    I can never work because if I do I lose my health insurance. I’m glad to say I never felt sorry for myself, it always bothered me that people did so. I never saw myself as any better or worse than anyone else. I never felt “special. ” Then one day in 2020 I found myself downloading a few Bible apps to find something that was missing. That’s when I had my moment, Jesus is like a smartphone that little device we can’t live without. we may have the world at our fingertips but the more you take it off the charger you are dying. at least once or twice a day you have to connect to a higher source to succeed and be everlasting.

    The next part of my life is fun to explain, if you’ve ever seen the movie My Big Fat Greek Wedding that’s my family. only instead of Greek and Windex Puerto Ricans use Vicks Vapor Rub on everything! They are loud and they will always tell you what’s on their mind without the consideration of a filter. Yet, when you need support and need someone to have your back on the darkest day. There’s not a better group of people to have in your corner. The best part is throughout my life we have been able to add members of the family that are not blood who would do the same thing for me.

    The next thing you’re wondering is what I do with my life besides writing these blogs. I am currently the vice chair of the New Jersey Council on Developmental Disabilities. I realized pretty early on in life that I was given in this disability for a reason. I didn’t know what the reason was didn’t know what that reason was. Like I said believed but was not connected. I had to speak out for others who could not speak for themselves. it is a labor of love as I am nothing more than a well-recognized volunteer. I’ve never received any monetary compensation for any of the work I’ve done.

    As for this website, it’s also a labor of love. There are so many misconceptions about the disabled population and the general public. I wanted to bridge the gaps between both worlds by sharing my own experiences. not for vanity but to put some actual positivity in the world. Please feel free to check out the Media Center and other publications on this website to see more work I’ve done to assist those like me.

    The very last thing I want you to know about me is, I’m single ladies! I did not start this website to meet women. I promise you that but at this point, there is no point in not putting myself out there anything could happen. we need to learn to love the person and not what they can offer us like some sort of business arrangement. Yes, I know so many people can not handle a relationship. Due to the nature of their disability but everyone is affected differently by the disability. I will never be on the cover of People’s sexiest man addition. they keep denying my application. (LOL) That’s what I want to change. We need to see the person and not the disability.

    That’s everything friends, if you have any questions please leave them in the comments I will be sure to read all of them. Follow my social media accounts linked to this website I post on them regularly. There will be new posts every Wednesday. Take care of each other and love each other. Have a great and blessed day see you soon.

    Jesse Schwartzman
    Jesse Schwartzman

    Jesse Schwartzman is a disability advocate who has worked in the legal, political, and advocacy fields. He currently works as an outreach and advocacy worker in the disability field. Jesse enjoys helping people and watching sports and movies. He can be reached at jesseschwartzman00@gmail.com. 

    Nicholas Taubenslag
    Nicholas Taubenslag

    My name is Nicholas Taubenslag. I am a passionate transportation advocate for the Disabled Population. 

    I started my advocacy journey at New Jersey Partner’s In Policy Making where I learned about the history of advocacy. As well as the Disability Rights issues that are facing us presently. For example, Inclusive Education, SSI and Medicaid, Housing, and of course Transportation. 

    I hope to be an asset to this blog and spread my knowledge and life experience to the Disability Community as a whole.

  • Physical Disability Not Included

    Physical Disability Not Included

    If you could hide one part of yourself what would it be? I think everyone has that one thing in real life that they’d rather not have to deal with daily, what if temporarily you can live without it? Hello, once again readers. Before I delve into the topic of this post I have to admit to a guilty pleasure, I like to watch the reality TV show Big Brother. Don’t judge me, please. Just in case you’re not familiar with the show, the premise is that 16 people are locked in the house together and go through crazy challenges to eliminate each other. At the end, when only two remain, those that are eliminated vote on the winner. That is an oversimplification but you get the idea. I published this post last year but it’s something that families need to talk about at the dinner table.

    From one man he made all the nations, that they should inhabit the whole earth; and he marked out their appointed times in history and the boundaries of their lands. Acts 17:26 NIV

    I’ve always liked the show and I like the idea that someone like me could actually compete in the show. I know I could probably not compete in a lot of the competitions, in fact at a simple glance there were only a few I could easily adapt to make it fair for me or someone like me using a wheelchair. I didn’t finish. To be clear this show has really shown a lot of diversity in its casting before, we even had a past winner on the autism spectrum. In season 23 I felt more hopeful than ever as the runner-up won a significant financial prize without winning a single competition advancing only on his strategic and social game. At the finale one of the contestants who voted on the winner revealed that she was on the autism spectrum. However, she did not want to disclose it as she wanted the other contestants to know just her as she was as a person. This made me feel very mixed emotions.

    24-year-old BrittanyD’Angelo came off as a very spunky and energetic young lady who was a friend to all. While I admire and fully understand why she would choose not to disclose her disability, I couldn’t help but feel a little hurt upon hearing this. Please understand me, part of me was truly happy for Brittany. People with disabilities should not have to disclose any part of a disability if they don’t feel comfortable and I know she’s not ashamed of her disability. As much as I have come to understand why I was given this disability over the years, there were still days growing up when I wished I could have gotten out of my chair and played football with the other kids. Even as an adult at least twice a week I have a scenario where I say to myself  “regular people don’t have to deal with this.”

    What D’Angelo did was still a tremendous accomplishment and I am absolutely not trying to put her down in any way but I have to ask, is what she did really fair? I know it’s not right every time one of us has a chance to be seen in public to represent the entire community and I argued against inspiration porn in past blogs but if we want to be seen as equals by society then why are we hiding our disability? So many people on the spectrum could never hide it, even the past winner couldn’t hide his own disability. If someone like me enters the Big Brother house I would have to roll in there with my entire chair and a caregiver for my personal needs.  I would have to ask the housemates for help with various tasks throughout the day Which would force the contestants and the viewing public to separate the person from the disability. In a way it’s hard for me because I can’t hide my disability, there’s nothing wrong or shameful about invisible disabilities. They do exist and they should be learned about by the public at the discretion of those who live with them. I just wanted to give people something to think about. The disability life can be very complex. See you guys next time and God bless you.

    Sources:
    ‘Big Brother 23’ Houseguest Britini D’Angelo Reveals She Has Autism

    https://www.forbes.com/sites/jenniferpalumbo/2022/01/25/how-one-cbs-big-brother-houseguest-is-promoting-autism-acceptance/?sh=516951619f72

  • Who is Bill Byrne?

    Who is Bill Byrne?

    Quick question to all my readers, Do you know the name of your town mayor?  I’ve lived in the southern part of New Jersey for almost 15 years now and I have no idea who he or she is. I’ve been advocating for my disability community officially since September 2016. I just move on to the next meeting trying to speak for those who cannot speak for themselves. Advocates and disability allies never acknowledge the work we do. We just keep going. There is an international disability community, we all work together to ensure dignity and respect for all regardless of circumstance. The New Jersey Council on Developmental Disabilities (NJCDD) hosted their Community Building Awards An event that is held every few years to honor leaders in the disability population.

    Earlier this week I was left speechless When I met a real-life disability hero, Mr. Bill Byrne. I’m ashamed to say this but I did not grow up training or believing in disability rights. I had a very laid-back approach and let my parents do everything. I didn’t begin to discover my voice until well after I was 18. people like Mr. Byrne were rockstars to me. Everyone knows of Madonna and The Beatles for example. At least in New Jersey and in some national circles, That’s how people describe Bill to me. Here are some of his accolades:

    1. He is friends with Mayor Dorothy of Morristown, NJ. He regularly attends town council meetings.
    2. One of the biggest advocacy organizations used to be known as the Association for Retarded Citizens. Thanks to Mr. Byrne and his colleagues There now known as just The Arc.  
    3. He petitioned the New Jersey government to have the words idiot, insane, and retard removed from the state constitution In the early 2000s. 
    4. He sits on many state, local, and national boards.
    5. A proclamation was passed in his township that declared August 16th as Bill Byrne’s Day.

    Yes, I knew he was receiving the Colleen Frazier award for Self Advocacy from the NJCDD weeks before the event. I am the vice chair of the NJCDD to be transparent. (They’re not sponsoring this article or any work that I post on this website.)  It never occurred to me that I would see him there or sit at the same table as he did. I didn’t realize it until he came to shake my hand. This gentleman who had been raising awareness for disability issues since before I had braces talked to me like  I was the next-door neighbor that he had known for years. So often I get frustrated because my work is not good enough for my perfectionist standards. I know we can all relate to that. We are so focused on tangible results, that we forget about the personal touch. Bill has mastered the personal touch.

    “If I must boast, I will boast of the things that show my weakness. The God and Father of the Lord Jesus, who is to be praised forever, knows that I am not lying.”2 Corinthians 11:30‭-‬31 NIV

    This man who cannot read or write and I’m sure has been put down by others, was so humble and passionate. The first words he spoke when he got up to the podium were to praise and Thank God. As a new Christian, this was the first time I completely understood the mission! All his work meant nothing to him without God. Mr.  Byrne from one disability advocate to another, I thank you for showing me the way. You reminded me of what matters. I pray these words can help someone else. Thank you for reading I will see you next week.

    Sources:

    https://patch.com/new-jersey/morristown/bill-byrne-gets-his-day-in-the-sun

    Bill Byrne, champion of the ‘differently abled,’ to be honored by Morristown mayor and council
  • Supporting the Disability Workforce

    Supporting the Disability Workforce

    By Jesse Schwartzman

    month we celebrate October as National Disability Employment Awareness Month
    (NDEAM). NDEAM was declared by Congress in 1988 to spread awareness and the
    contributions of people with disabilities while at work. People in the disability community want to
    work and are ready to work now more than ever with small businesses, corporations, and our
    own government looking to hire workers. Work should always include equal pay for equal work.
    I am glad this month is here to bring awareness because there is still so much that needs to be
    done in NJ and across the country. As reported on page 12 of Advancing New Jersey’s
    Employment First Report, of the individuals receiving day and employment services from DDD,
    only 14% are in integrated employment services, which is the eighth lowest in the nation.
    Competitive integrated employment (CIE) is having people with disabilities earn the same pay
    as others without disabilities. It means those with disabilities can work where people without
    disabilities work. Across the country, the employment rate for adults with disabilities over the
    age of 25 is bleak. Among the population ages 25 to 54, around 36% of people with a disability
    were in the workforce, compared to 80% of those without a disability. For workers ages 65 and
    older, 7.3% with a disability were in the workforce, compared to 21.7% without a disability.
    Since the onset of the pandemic, now hiring signs are present at most businesses, and
    corporations are now not only making commercials to get consumers to buy their products, but
    they are also attempting to get consumers to work for them. According to a survey of 1,100
    businesses by Goldman Sachs 10,000 Small Business Voices, 90% of businesses that are
    hiring are finding it difficult to recruit qualified candidates for open positions. In March,
    employers advertised a record 11.5 million job openings. The United States now has two job
    openings for every unemployed person. The business community at large needs to work with
    the disability community so more job openings can be filled by individuals with disabilities.
    Common misconceptions such as believing every person with a disability needs a workplace
    accommodation, are false. According to a U.S. Chamber of Commerce study, only 14.5
    employees with disabilities request workplace accommodations. According to that same study,
    companies with the most inclusive workplaces for employees with disabilities experienced
    nearly 30% higher revenues and greater economic profits.
    In NJ work is being done to get more people with disabilities jobs. New Jersey Governor Phil
    Murphy, has signed four bills that should improve the employment rate for people with
    disabilities in NJ. S3455 Revises eligibility requirements for NJ Workability Program and
    Personal Assistance Services Program. This means individuals with disabilities on Medicaid can
    continue to receive services while starting or continuing to work without an income cap or age
    cap. Bill S1937 signed by the Governor in 2021 establishes a task force to promote employment
    by state agencies for people with disabilities, Bill A5294 signed by the Governor this year,
    provides fast-track hiring and advancement employment opportunities by the state for persons
    with significant disabilities. Lastly, Bill A5296 signed by the Governor this year provides for
    employment by the state of certain persons with disabilities. All four have yet to be implemented
    and we hope that Governor Murphy’s administration gets to work on the legislation.

    October is National Disability Employment Awareness MonthDownload

    Source

  • Meet David

    Meet David

    David Chapignon

    Mr. David Champignon is a Political Science major from Edinboro University and a graduate of the New Jersey Partners in Policymaking Program. He is a proven leader and staunch advocate for people with disabilities. He currently lives with his wife Jenny in Sayre Pennsylvania. Alongside their dogs and cats, they are living proof that nothing is impossible. His experience blogging and semi-published works make him a perfect candidate to start this project with. 

  • An Interabled Love Story Part 2

    An Interabled Love Story Part 2

    Welcome back, friends. as promised I am presenting my second interview with Charlie and Margaret. A fabulous interabled couple. Since the last interview in 2020, they’re now engaged and more in love than ever. You can find more about the story on their blog and other social media accounts at Just an Interabled Thing. I gave them each a set of questions their answers have never been altered. They deal with society’s judgments on a daily basis they handle them with grace and kindness. They are an example to everyone that love is real. Regardless of circumstance. I am so thankful they gave me this opportunity to be part of their lives. Hope everyone enjoys it and I will see you next week.

    Questions for Margaret:

    1. Your fiance is not independently wealthy and cannot do basic household chores like taking out the garbage, how does he provide for you?

        “There are different definitions of providing, I would argue that providing emotional support and things like that is harder than providing financially or physically, you know what I mean? Charlie is amazing with emotional support. Our current living situation is living rent-free with my dad, and I do all the cooking and most of the cleaning around the house, we are both so grateful for my dad letting us live in his house.”

    2. How has this relationship changed you as a person?

       “I think that dating Charlie has given me more confidence. When you are in an interabled relationship, you are almost guaranteed to get looked at in public. Being with him has taught me not to care what other people think when I get looked at like I shouldn’t be with him or like I was crazy for being with him.”

    3. Was  Charlie’s family afraid of you dating him? (Follow up) Did you have to earn their trust?

      “ I don’t know the answer to that. I’m sure there were some apprehensions about it at first, and I’d like to think that I’ve earned their trust.”

    4. Being Charlie’s caregiver is easy now because you’re young, What do you plan to do when you both get older and your needs change?

       “I want it to just be me for as long as I can, we have talked about this and when I am no longer able to take care of Charlie on my own, that is when we will look into getting help.”

    5. Are you hesitant to get married due to the disability marriage penalty? The assumption is you would have to take on the financial burden as well as the caregiving one.

     “Absolutely, it amazes me that disabled people still don’t have marriage equality, maybe that stems from the assumption that disabled people are not worthy partners, I don’t know. It scares me as of now because I don’t make that much money and I have student loans to pay off and bills, and we don’t even have our own home yet. Charlie has a bachelor’s degree and tries so hard to get a job and has yet to have success, but hopefully one day a company will see all of his potentials and he will have a job.”

    "Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in love. Honor one another above yourselves."Romans 12:9‭-‬10 NIV
    Questions for Charlie:
    1. On the subject of engagement, everyone always focuses on the female. as a disabled male, the expectation is that you will never get married. What did it mean to you to be able to “pop the question?”

    “Honestly, I never thought I would get to that point with someone. I was so used to getting to the CP part of the discussion and people disappearing. I knew very early on that Margaret was the one and knew Disney would be the place. When it came time to pop the question, I thought I would be nervous, but I was not. To me, It was the easiest question I ever asked.”

    1. How can advocates like yourself, break this false expectation of people with disabilities unable to love?

    “Society views disabled people as unworthy of love. To break that ableist view, Margaret and I always post pictures pretty much daily on each of our Instagrams of places we go, etc. We are also not afraid to be all over in public either.”

    1. How has this relationship made you more independent not only physically but as a complete person? (Follow up) If God forbid you guys broke up, Are you afraid you’d have to move back home or into a group home facility?

    “My relationship with Margaret has definitely made me more open and vulnerable. Margaret has always allowed me to be my true self around her and we talk about anything and everything. If we ever broke up, we would no doubt find our way back, there’s no one else for me.”

    1. Was there any aspect of your life as a whole that you will reluctant to let her see or help you with?

    “No that were any aspects of my life that I was reluctant for Margaret to see or help with. I think her experience with people with a disability made everything easier. Margaret was very open about wanting to learn about my care and was helping with getting me dressed, showering, and bathroom stuff from the beginning.”

    1. What do you say to any skeptics that believe that Margaret settled for you and she could do better?

    “To society, our love is as real as it gets. Just like me, Margaret thought she would never find something like this. Margaret never saw my CP or my wheelchair first, she saw me as a person. I know for sure society thinks well he can’t do anything and as a result sees no value. I do plenty for us and Margaret makes me want to be the best version of myself every day.” 

  • An Interabled Love Story Part 1

    An Interabled Love Story Part 1

    Happy Wednesday wonderful friends. I’ve been a blogger for a few years now, but people don’t know it because I relaunched my website in March of 2022. As part of that relaunch, I wanted to focus on sharing the stories of other disabled content creators.  I recently had a chance to catch up with Margaret and Charlie two very good friends of mine. I can’t wait to share the latest interview I had with them but before I do It’s important to reintroduce their story to all my new followers. Below is the first interview I have with them back in the spring of 2020. You can read more about the story on their blog Just interabled Things. Come back next week to learn more about their story.

    “Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.” 1 Corinthians 13:4‭-‬7 NIV

      Margaret and Charlie are an interabled couple from New York.  For those of you who don’t know “Interabled” is the term used when one of the partners in the relationship has some sort of disability and the other is “normal.” Charlie is diagnosed with Cerebral Palsy like me. In some ways, the disability community can be very small Charlie and I started networking after I discovered his blog with Margaret. Anyone who knows me would tell you that I’m not the kind of guy who falls for sappy love stories. I can’t tell you the last romantic comedy I sat down to watch. They are usually reserved for background noise. The reason I fell in love with their story was simply that it was real and not Hollywood fiction. They provide hope for those of us in the disability community on a very taboo topic, disability, and love. Thank you to Margaret and Charlie for participating in this blog. I hope we can all learn something from it. Love Is Love.

    Please tell all of us how you met.

        – We met on an app called Hinge. I (Margaret) had joined Hinge on Sunday and wasn’t sure if I was going to keep the app for long because I was never a fan of the whole online dating thing. Monday morning I checked my phone at work and saw a message from Charlie and we spent the whole day talking. 

    What first attracted you to each other?

        — Margret: I fell in love with Charlie’s smile. If I am being honest, I still fall for his smile every day. 

        — Charlie: My disability was not the first conversation we had. Margaret wanted to know who I was other than my disability.

    Name one annoying habit about the other that you would not change.

        – Margaret: Charlie likes to sleep impossibly close to me, but I honestly can’t imagine not sleeping, literally holding each other. 

        — Charlie: I was never a person who naps. Margaret loves her naps and I now love them, all thanks to her.

    How do you know it was love and not just some passing fling?

        – Margaret: The second time we FaceTimed, we sat there for almost 6 hours talking. We never ran out of things to talk about and the conversation just felt natural.

        — Charlie: I don’t want to be cliche but I am going to anyway, it was when I woke up the second day after we matched and she was still there.

    What would you tell someone starting an interabled relationship?

        – Margaret: Keep an open mind, do not let their disability scare you off, and don’t be afraid to ask them questions about what they need help with. It is not for everyone, not everyone is meant to date someone with a disability, and society is not ready for it either so you will get looked at, you will get asked if you’re their aid or their sibling even and people will stare, just let them.

        — Charlie: Come in with an open mind, get to know them more than their disability but realize that their disability is still a part of who they are.

    Some people would say that people with a disability should only date other people with disabilities because only they will understand. How do you respond to that?

        — Margaret: I would say that you don’t need to have a disability to completely understand if you are able to put yourself in their shoes. 

        — Charlie: I personally wouldn’t date another person with a disability, we would both need help that we couldn’t give each other.

    There is a misconception that Margaret must have sacrificed everything to be with Charlie. What do you think about that?

        – Margaret: It is definitely a misconception. There really isn’t anything that I have had to sacrifice to be with Charlie. The only thing really is that when we are getting ready for the day or to go somewhere it takes longer because I have to get Charlie ready and get myself ready, but we have gotten it down to a system and it does not even take that long anymore, especially our weekday mornings when I have work.

    Is being Charlie’s main caregiver a burden?

        – Margaret: I would say no. The caregiving aspects of our relationship to me are just more things for us to do together. Being in an interabled relationship brings a whole new level of intimacy to the relationship.

    I apologize for this question, you guys do NOT have to answer it. I’m just asking it because I know someone will ask it. It is Nobody’s Business. I would never ask a stranger but I wanted my blog to be real. Can you have sex and are you both satisfied?

     Both   – Yes and yes, that’s as detailed as that’ll ever get, I get people being curious but our sex life is just for us.

    What do you guys see yourselves in the next 5 years?

    Both — I would say that we want to be living in a different state, be married, and have a few dogs. 

  • Amazing Advocacy Moments

    Amazing Advocacy Moments

    Hello, before I begin I want to send each one of you a very big hug. Every so often I get asked what I do for a living. I don’t always have a correct answer because being a disability advocate is not a traditional job. Even if it was there wouldn’t be a lot of money in it. with a labor of love, it’s not always appropriate to stop and reflect on your achievements because you’re always moving on to the next mission that needs to be completed. Over the last few weeks, I have been fortunate to see some of the fruit of my blessings from God. This is not me bragging but stopping to smell the roses please take a minute and go with me on this journey. I will be back with a traditional blog post next week.

    "Since we live by the Spirit, let us keep in step with the Spirit."
    Galatians 5:25 NIV

    August 16, 2022:

    August 12, 2022

    August 11, 2022

    July, 13, 2022

    https://njcdd.org/financial-slavery/
  • Financial Slavery

    Financial Slavery

    I’m a 35-year-old single male with a developmental disability. I’m a capitalist and I love this country but I am financially suffocating. I am writing this on July 5, 2022. The day after this great nation celebrated its independence. This is the land of the free, the home of the brave, and most of all opportunity. Individuals like myself are never given this opportunity. I don’t believe in complaining. I support small businesses and I admire corporations like Google, thanks to the dictation software on this Chromebook I can give you blogs like these. I would like to showcase how expensive it is to live with a disability. I want to focus on two specific numbers $2,000 and $3,000. 

    One person gives freely, yet gains even more; another withholds unduly, but comes to poverty.
    Proverbs 11:24 NIV

    As an individual, the maximum I’m allowed to have in my bank account is $2,000 at any one time. If I were to get married that’s when I am eligible to make $3,000, The reason why no one is in a rush to get married with a disability? You cannot have more than $3,000 between both partners. Most disabled Americans and the majority of non-disabled know these numbers. What people don’t realize is these numbers have not been increased since 1983 by President Ronald Reagan. According to the national price index, the current inflation rate is 8.6% The monthly maximum Federal amounts for 2022 are $841 for an eligible individual and $1,261 for an eligible individual with an eligible spouse. Every asset except for the house you live in will count against you. Most of my colleagues with disabilities including myself do not make the maximum the average amongst people I know is approximately $500 a month. The majority of Americans have invested in some form of stocks.  People with disabilities cannot afford this luxury. 

    The average accessible vehicle is $60,000. For me to sit in my chair and be the advocate that I am every day costs $50,000.  I need 24/7 personal care. To receive my care I must remain Medicaid eligible. All I have to do to maintain my eligibility is stay below the poverty line. I am not an economist but something seems out of balance with the American dream. There are programs like Able Accounts and Special Needs Trust Funds that will allow disabled Americans to save but they are very complex and restricted. New Jersey also just updated its WorkAbility program In January of 2022 but as of July of the same year, the signed law is still not been implemented. Instead of circumventing an already overloaded system, if you raise the asset limit to $10,000 per individual, we will ensure that people with disabilities can contribute to this country’s economy. If we don’t fight for financial freedom, then some Americans will always be slaves.

    Note:

    This was also featured in the disability in the Disability in Focus Blog run by the New Jersey Council on Developmental Disabilities:

    https://njcdd.org/financial-slavery/