The Advocacy Life Podcast & Blog

Category: Disability Awareness

  • 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.

  • Toes in the Sand

    Toes in the Sand

    I want to wish all my readers a wonderful Wednesday. for this week’s post, I decided to share an excerpt from my first publication Confessions From Disability  Limbo  Available exclusively on Amazon Please enjoy see you next Wednesday. I welcome all comments Good and bad.

    There is a question that every person with a disability gets asked a few times in their life. “What would you do if you had an entire day without your disability?” The first thing I would do is get up as early as possible because I know I would need every minute. I would stand up and use the bathroom all by myself. It always felt a little emasculating to pee sitting down to be perfectly honest. Then I would get dressed and find a baseball glove and throw some pitches on the mound. I have no interest in batting. Just let me throw the ball, to get rid of all of my frustrations. Next, I would get in the car and listen to whatever music I wanted, because no one could change stations but me. I would drive to as many friends as I could just to give them hugs. Something that no one realizes is because I’m sitting down, I’ve never actually hugged someone. I always have to wait till they give me one. Make a quick stop at the beach next, just to feel the sand on my toes. 

    The last thing I would do is get all dressed up and go dancing. This is what I want most of all. I would find the prettiest girl on the dance floor and dip her just like they do in old movies. I know what you’re thinking. “You could go dancing now.” I have taken my wheelchair out on the dance floor many times. But I want to go to a club and dance all night. Even though I have tons of wonderful staff and Friends I have nobody to go to stay out all night with and just dance. I would dance until the last minute until I fell because the 24 hours had expired. Then I would get back to my chair with a gigantic smile on my face.

  • The Urgency for the Disability Workforce

    The Urgency for the Disability Workforce

    Hello, my wonderful reader thank you once again for choosing to spend a little time with me on your Wednesday. I get asked every so often what do you do for a living? In today’s post, I want to provide a glimpse into that. The following are my remarks that were released as part of the event that was held on May 4, 2022, by the New Jersey Council on Developmental Disabilities (NJCDD.) I hope you enjoyed and I can’t wait to read your comments.

    “The tongue has the power of life and death, and those who love it will eat its fruit.” Proverbs 18:21 NIV

     NOTE NJCDD Did not sponsor this post or any other work on this website. The statement featured is the opinion of the author prior to editing on the date of release. You can find a full copy of the report mentioned at the bottom of this post. 

    Greetings and warmest regards, Thank you all for making time to discuss this very prevalent issue affecting the most underserved and underrepresented population in New Jersey and the nation at large. My name is Kevin Nuñez I am fortunate to be the current Vice-Chair of the New Jersey Council on Developmental Disabilities. I’m a 34-year-old Puerto Rican male living with Cerebral Palsy.

    It is a well-known statistic that one in four Americans are diagnosed with some form of developmental disability, this is roughly 25% of our population. Our population is willing and able to pay their share in taxes and become contributing members of their local communities. All we need are solid opportunities. The reality is the Employment First policy that was passed a decade ago did not become a call to action but instead a slogan for stakeholders. The intent was there but the execution was not. The outline steps proposed in his plan are prudent and cost-effective.

    Too often have individuals like myself been threatened with the $2,000 asset limit, as we reached the end of educational entitlement. Recently legislation was passed to enhance New Jersey’s WorrkAbility to eliminate the unearned income caps and age requirements. It is common sense measures like these that would create the chances for this population to not only succeed on a temporary basis but thrive in a long term. However, if individuals and families do not know about these programs as they reach the critical age, then the tireless work of the advocates and legislators would be for nothing. education and sustainability are the keys to American progression. 

    If we invest in the individual and what their needs are to maintain competitive employment the disability system would not be so overwhelmed, the reverberation would be that those who can work could help support those who need more intense support and cannot. one hand has to wash the other it’s that simple.  The employment first initiative is derived from the idea of person first. 

    In closing, I would like to leave you with this,  “promote the general Welfare, and secure the Blessings of Liberty” This comes directly from the US Constitution. The same one that begins with “ We the people”  PEOPLE with disabilities just want the same opportunities as every other American. Thank you for your time and have a good day.

    Advancing_New_Jerseys_Employment_First_Full_ReportDownload
  • Silent Warriors

    Silent Warriors

    @theadvocacylifepodcastat

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    How do you use your voice? Our voices are one gift we usually take for granted. I know I do. As an advocate I always try to remember That I don’t speak for myself, I speak for others as well if not more. We all speak too much and say things we shouldn’t. Could you imagine not being able to say anything at all? We need to stop complaining about every little thing and appreciate what we already have. I have been fortunate enough in my travels to meet some wonderful individuals who are non-verbal. They are some of the best people in this world, only we never take the time to notice. I hope this post will shine a light on those we have forgotten. This past year has been difficult for all of us. Imagine being scared and not being able to express it or fully understand it.

     This will not be the longest post I have ever written or even the most eloquent, but I pray it makes the biggest difference in changing our collective perspective. Below are 10 simple sentences that we’ve all said, but if we could never have said them at all, our lives would have been greatly affected. 

    The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord?” Exodus 4:11 NIV

    To my dear friends who have never spoken a word, thank you for your patience and understanding from lack of mindfulness. Please take your time reading each statement and let it flow through you.

    1. “I don’t like the feeling of this shirt.”
    2. “Why do my shoes not feel right?”
    3. “How long is this car ride? I have to go to the bathroom. “
    4. “What happened to that gracious lady who always remembered to put mayonnaise on my sandwiches? “
    5. “I don’t want to eat this sandwich, it’s so dry.”
    6. “Your hands are icy.”
    7. “My ear hurts. I really think I need to go to the doctor.” 
    8. “I don’t want to watch this TV show. Why do they always put it on?”
    9. “That person really hurt me! Don’t put me with them!”
    10. “I wish the girl knew how pretty she really was.”

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • Patience Is A Virtue: Nick Takeover

    Patience Is A Virtue: Nick Takeover

    @theadvocacylifepodcastat

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    How One Finds Balance Between Dependency On Others VS Self Advocacy

    By, Nicholas Taubenslag

    As children, we depend on parents to guide, teach, and for emotional support. They guide and teach us what’s wrong and what’s right. Whenever we have a negative experience that hurts our self-esteem we lean on them to help build it back up. For example, In the school years of my life I was emotionally tormented by bullies whom I thought were “friends”, however, I came to find out for myself they weren’t thinking in my best interest. My parents taught me that it’s important to forgive those people internally. Forgiveness is not condoning the other person’s behavior and/or actions by any means. It’s about finding a small measure of peace within oneself. Jesus Christ illustrates this point perfectly when he stated on the cross 

     Jesus said, “Father, forgive them, for they do not know what they are doing.” And they divided up his clothes by casting lots."
    Luke 23:34 NIV

    There comes a time in every person’s life when he or she needs to gradually learn how to ask for themselves what they want or need from others. For instance, my first taste of asking for what I wanted was when I was about four years old. My mom and I were at a bagel store. I wanted to get myself a “mini bagel”. I then asked my mom to get me one once we got to the front of the line. She said, “ If you can find a way to get to the front of the line in a polite, respectful, and courteous manner you can ask for it yourself.” So, I said please excuse me to every customer in front of me and when I finally got to the front of the line. I politely asked the employee If I could please have a mini bagel. As you can imagine I was overjoyed with having my prize. I didn’t realize at the time that later in my life I’d realize that Self Advocacy was part of my life purpose.

    As a Boy Scout earlier on in my life. I always had to treat everyone with kindness, love, and respect. When I needed assistance in order to complete merit I learned to partner with others to complete the badge. We were taught in scouts to do a good deed daily for someone else. In turn, the other person is willing to help you out. 

    One lesson I have learned in my life is not to act impulsively without thinking or consulting someone prior. The key thing is to have patience and release control over the desired outcome once we do that things flow a lot more easily.

    You’re probably asking yourselves how do I find the balance between depending on others and going ahead without their help or advocating for yourself. From my own experience, it takes patience, resilience, and never giving up. When asking for what you want it’s important to ask in a calm, polite, and respectful manner. There is a famous statement that illustrates this point perfectly. “You get more with honey than you do with a sting.” Everything takes time to get things done. 

    To sum this all up, With patience, a calm demeanor and resilience one can achieve anything their heart desires. May we all one day be able to ask for what we want confidently.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • VOLUNTARY HOSTAGE SITUATION

    VOLUNTARY HOSTAGE SITUATION

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    The following post was written by Ali Ingersoll as a simple Facebook post that I absolutely loved because it describes the life of a person with a disability better than I ever could. She is an outstanding disability advocate and blogger you can find more of her work on her website Quickly Quad Diaries

    This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village – caregivers, family, friends, agencies, medical professionals, etc.

    I need to first start out by saying that anyone willing to help me, paid or not paid, physically live my life each day is such a beautiful gift and I appreciate every single human who takes time out of their life to make my life possible.

    However, there is a side of life many of you who do not live with a disability cannot possibly see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.

    I have to be mindful of those who take care of me. I have to make sure they feel safe, compensated, loved, taken care of, and appreciated. This is important. Anyone who is helping me is responsible for making sure I physically stay alive each day. While I might direct my life I don’t always have control at the same time. This can be emotionally crushing at times.

    How so? Well, if I am not carefully managing the multiple emotions of people in my household to make sure they remain happy and healthy then they either will not be able to take care of me or will not want to. Many people feed off my positivity and determination. This is not to say I don’t have my hard days, but who wants to the care of a person who is grumpy or angry or running a drill Sgt. type of life each and every moment?

    If I want to snack at nighttime I have to ask someone for it. I can’t simply get up and get it myself. However, if I just asked that person to do four things in a row for me by getting up and down they might get a little bit annoyed with yet another thing I ask them because they have been running around for me. I have to strategically think about how and when I ask for things.

    At times I feel like I have become my own emotional hostage. I have to push down many of my personal emotions to make sure others around me are emotionally taken care of before dealing with my own personal emotions at times. This is hard. This can feel so lonely. Often times, I feel more emotionally disabled than I do physically. However, this is my choice. It is a decision I’ve made.

    My life hinges upon the way other people feel. Think about this. Critically. If you are able-bodied and you want something, you simply get up or go out and get it. I can’t do this. Sometimes I sit and cry to myself at night after a long day because everyone else around me is having a hard day, so I need to take care of them, so they will take care of me. It’s a give-and-take, back and forth, and it can be utterly emotionally draining.

    I know this is my life. I don’t often complain. I keep pushing forward, but it can be devastating at moments. I’ve learned to live this way for the last 12 years, and I am strong, but even I have my moments. I do know many of my friends who have a strict line between church and state with respect to making sure people’s emotions do not bleed into their own lives when they are being taken care of.

    I have tried this. It has failed for me. If I do not take care of those around me then those around me may not have the will or desire to help me.

    People around me thrive on my positivity and go-getter attitude. This is great, and most of the time I compartmentalize many of my emotions. I’m not saying this is healthy. It is not. However, this is my life. This is how I’ve had to adjust and it can be utterly terrifying. Truly.

    My biggest fear is being left alone and not having anyone to have my back so that I don’t physically die in a day. The simplest of things can kill me – my catheter getting clogged and overfilling, being alone, and having a stroke. It can happen in 30 minutes.

    So, I have somehow willingly put myself in my own mental hostage situation. It is hard. It is life. It is my life. These are the compromises I have to make in order to have a household of people around me who want to be around me, and help me.

    I only ask that the next time you get up to go get a cup of coffee or tea you think about how you are able to do that on your own. You don’t need help. Just take a moment appreciate your fully functioning body is all I ask.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

    Subscribe
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    ← Back

    Thank you for your response. ✨