The Advocacy Life Podcast & Blog

Tag: Disability Awareness

  • 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/

  • The History and Future of Disability Pride

    The History and Future of Disability Pride

    As Americans, there are certain days we all recognize when we look at our calendars. Independence Day, Labor Day, Memorial Day, and Martin Luther King Day.  future generations of students will be taught about Barack Obama and Juneteenth. We have such a rich history to learn from and be proud of. However, there is a particular group of heroes that have been neglected. The time has come to acknowledge what they have done and call a new generation of advocates into action.

    Rosa Parks and Jackie Robinson are names every person in this country knows. Unless you have a disability, names like Judy Heumann, Brad Lomax, and Katie Cole are foreign to you. These proud patriots are some of the leaders of the protest that has come to be known as the 504 Sit-in.  Starting April 5, 1977, approximately 150 individuals with various disabilities occupied the Office of the U.S. Department of Health, Education, and Welfare in San Francisco for 28 days.  To require enforcement of The Rehabilitation Act that was signed into law a few years earlier. For nearly a month these brave people risked their lives. Going without medication and personal care. You would think after such an effort You would see change begin to happen, but it took 13 years to see any tangible evidence of equality.

    Blessed are the peacemakers, for they will be called children of God.
Matthew 5:9 NIV

    Let’s talk about July 26, 1990. Without using Google most of the population are unaware that this is the day the Americans with Disabilities Act (ADA) was passed. This legislation means much more than handlebars in the bathrooms and curb cuts on sidewalks. It guaranteed civil rights for individuals with disabilities. There is a misconception that because of this law All the problems of the disability community are solved. Earlier this week the Department of Justice filed a lawsuit against the Chicago Cubs and Wrigley Field for significant violations after a multi-year renovation project. How long must we remain an afterthought?

     In the mid-1980s journalist, Geraldo Rivera did a series of stories exposing the horrific treatment of individuals in Developmental Centers.  Earlier this year a nursing home in Sussex County New Jersey made national headlines for having our most vulnerable citizens in inhumane conditions leading to death and malnourishment. Over 200 humans were locked away without committing any crime and deprived of due process. I love this country and I am a proud American but advocates like myself Can no longer stand by while we sponsor second-class citizenship. That is not in the Constitution I studied.

    Did you know that there is a disability pride flag? The colors are a separate concept from the rainbow flag identified with the LGBTQ community. The five colors represent the different needs and experiences of the individual. Mental Illness, Intellectual and Developmental Disabilities, Invisible and Undiagnosed Disabilities, Physical Disabilities, and Sensory Disabilities. The month of July is known as disability pride month, but what exactly is disability pride? I was asked this question a few days ago, and this was my answer. “Disability pride is loving and accepting yourself, even though the world will not.” 

    Ken Capone leads the charge to end sub-minimum wage in segregated workshops. In the year 2022, they are still legal.  Emily Voorde is a female with a disability. She is the Associate Director for Disability Community Engagement in the White House. Their tireless efforts are never seen.  New Jersey has its own coalition of heroes.  Keith Jones is a disability activist, award-winning author, and former presidential candidate. Project Freedom helps individuals obtain accessible housing. Their founder Norman Smith has a disability.

    The inscription on the Statue of Liberty reads “”Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore.””  This was written in 1883 139 years later and people like myself Can’t read it, because of all those steps. 

    The next generation of disability advocates must not rest. We need to rise up and continue the work that has been laid before us. In January of 2022, Governor Murphy signed a law updating New Jersey’s WorkAbility program, as of July of the same year the legislation is still not implemented. With these updates, Disabled New Jersey residents would be able to earn a competitive wage, pay taxes, and keep their health benefits. By entering the workforce people who can work can support those with more complex medical needs. If we invest in more medical group homes we can avoid tragedies like the one mentioned above. This would create more jobs for caregivers and relieve stress on the overwhelmed disability care system. On the national level, We must end the marriage penalty and raise the $2,000 asset limit set in 1983. America cannot become the land of opportunity until all Americans have a chance to thrive.

    Note: every advocate mentioned Is very well known. It is very easy to learn more about them if you just take the time

  • Disability Burnout Solutions

    Disability Burnout Solutions

    Have you ever felt burnt out? That’s what I want to talk to my readers about today. This is one of those posts that I’m going to love to write but someone is either going to say I’m mentally unstable or completely naive. I’m writing this because I know I’m not the only one. I’m not depressed, I’m actually in a very good mood right now.  Life is complicated. We all know that it’s how we compartmentalize those complications that matter. ask any mom if they have all locked themselves in a bathroom for 15 to 20 minutes just to get a break from their kids that they love more than anything. Any father has been known to blast the nastiest music when the kids step out of the car just because they’re tired of listening to Baby Shark. There is a day of the week that we’re supposed to rest and not do any work. Whether we take advantage of it or not is a whole different story but the day is there regardless. I can’t rest. I have disability burnout!

    “aren’t you sitting down in your wheelchair, so how can you be tired?” Let me be clear I absolutely and unequivocally love my life. I don’t want to change it. I love answering kids’ questions in public, even though their parents can sometimes be jerks. My father, who is my primary caregiver, can be one of the funniest people in the world. That doesn’t mean I don’t feel like a burden sometimes when I can see he is exhausted after taking me back and forth to doctor’s appointments.  I thank God every time I get a chance to write a policy for those who cannot speak for themselves.  My eyes still get tired at 11:30 at night when I’m still looking through my emails.  Being broke is not fun but I’ve never gone hungry or gone without a roof over my head. I don’t need to get married tomorrow but it would be nice to be truly missed by someone special when they had a bad day. getting that look that says “ I want you right now!”

    The hardest part about having a disability it’s not all the physical things I can’t do myself. is the fact that there will never be any days off. I don’t get to walk on Sundays. It’s not like losing 10 lbs by going on a diet. all the physical therapy in the world can only do so much, and I love my physical therapy sessions. Some parts of my body hurt every day. except for some breakthrough in science I am most likely going to die with this Cerebral Palsy I was born with. thinking about all this is and can be exhausting. There is a very difficult but simple way to handle this paradox.

    “We who are strong ought to bear with the failings of the weak and not to please ourselves. Each of us should please our neighbors for their good, to build them up.” Romans 15:1‭-‬2 NIV

     All you have to do is not deny it at all but refuse to dwell in it. Instead, you look at all the light that is around you and all that you can do for yourself. it could be as easy as reading these words or having them read to you.  giving up is easy finding great ways to continue that’s the challenge. That begins every day, isn’t that worth living for? I love you all, have a great day friends.

  • July is Disability Pride Month

    July is Disability Pride Month

    By Jesse Schwartzman

    The following statement and subsequent article are written and produced by Jesse Schwartzman He is a tremendous disability advocate who formerly worked on Governor Philip Murphy’s reelection campaign in New Jersey I hope you all enjoy his fresh perspective.

    Progress has been made but it is not enough. We are at least 15 percent of the population but do you see people with disabilities integrated into society?
    It is time to uplift voices and bring our own seats to the table.
    Look to your left and your right disability can be hidden and happen anytime.
    The intersectionality is insane.
    Be kind to everyone, especially yourself.
    Do your best and improve at least 1 percent each and every day.

    https://njcdd.org/personal-touch-and-why-it-matters/
  • 35th Trip Around the Sun

    35th Trip Around the Sun

    Salutations my beautiful readers I hope these words can make your heart smile for a few minutes. This message goes out to anyone that has a disability. This world will not understand you, this world will betray you. However, God will not because he does not make mistakes. By the time you read this, I would have just celebrated my 35th birthday. I’ve officially reached the age where you don’t want to count anymore! This year more than ever, I found myself contemplating the meaning of life as an adult with Cerebral Palsy. My heart and mind battled for several weeks leading up to the big day. This world and the society we built have placed a set of expectations on a person by this state in their life. How do you think I measure up?


    I have no traditional source of income. I’m still looking for a life partner. I have no children or anyone to pass down my legacy. I depend on others to live my life. Some would say I have no value in our society. This physical world has no expectations of me. Even if people never said it out loud, The look on their faces says “He can’t do anything for himself.” If I’m being honest with myself these assumptions are correct. So why don’t I give up? Every once in the blue moon I might get an Amazon gift card from my advocacy activities. Every time someone buys my book I wonder, I hope they read it and understand the message. What if it’s just sitting on the counter? Every woman I know is so busy they can’t return a text. At this age any woman I consider having a relationship with it’s probably going to have a child of her own, I’m not the usual stepdad girls look for. If I have nothing and will most likely never have anything of value, what is left to fight for?

    "And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him." Hebrews 11:6 NIV


    I found my answer in Jesus and his grace! I fight for his love and his grace that I don’t deserve and cannot earn. Yes, I will admit a few weeks ago I was angry, frustrated, and hurt with the outcome of my life. I’m a sinner, a hypocrite and many people are much more deserving than I am. Especially amongst my disability community. So many people have no voice and died in the last few years with this global situation. I don’t like this world but it is so seductive. 

    "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." James 1:2‭-‬3 NIV

    I don’t always understand why I was put on this planet that doesn’t understand me and will not accept me. All I know is that I have faith in God’s perfect plan. He uses weakness for his own good and his own Glory. In the long run, I will reap the benefits with my savior Jesus Christ. A general does not use his best warriors for easy battles. They’re saved for the important ones. Wherever you go though it is only temporary God’s kingdom is forever Thank you for these few minutes together friends see you next time.