The Advocacy Life Podcast & Blog

Category: cerebral palsy

  • 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.” 

  • 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/

  • 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.

  • Stand and Hug

    Stand and Hug

    “Can you stand up?” That’s something I get asked all the time. So let me answer the question once and for all. The answer is yes and no at the same time. I can bear my weight which creates the illusion that I’m standing but in reality, I can tip over at any moment once someone places me in that standing position. The only way I can stand semi-independently is if I’m holding on to a grab bar or something of that nature. Eventually, my arms will give out and I will be down on the floor until someone comes and picks me up. Let me be clear, when I say I am bearing my own weight in this case it means that I’m doing the work my muscles are sustaining my body mass in this position. Someone still needs to help stabilize me. They should not have to exert any effort at all. The ironic thing is so many people in my life have never seen me do this activity. I only do it when I am about to transfer or in some therapeutic setting. You don’t need to be a physical therapist or a caregiver to get me into this position. It just takes a lot of practice, not skill. The practice is just confidence-building for the other person to realize you are not going to drop me and we really can’t hurt each other. The cool thing about this activity is that it is in the perfect position for me to hug others.

    Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:8 NIV

    Something people don’t realize is because I’m always sitting down I can never give the people I love a gentle embrace. I always have to wait for them to give me one. People know me in one of two ways: a loudmouth obnoxious joker or a constant professional looking for the next opportunity to advocate for others. People are so used to seeing me in a seated position they don’t even think twice about seeing me stand up. The look of shock and horror I receive when I ask people “Can you send me up so I can give you a hug” never gets old. Sometimes I don’t ask because I know they would feel uncomfortable. That’s one of the reasons why I choose to publish this. We live in a world where showing affection is often wrong and frowned upon. So many people require simple human contact. These are the people I’ve always wanted to hug but never have.

    My parents, step-parents, and grandparents have all felt my embrace since they have all transferred me at one point or another. So even though I love you all very much this list is not for you. Thank you for your strong and kind hugs throughout the years. Please remember like always the order doesn’t matter because I love them all in one way or another.

    First, I owe so many hugs to my little cousins. I usually only went to Puerto Rico on vacation and I was so much older than most of them. A lot of them have never seen me without my wheelchair. 

    Next would be without a doubt my colleagues at the New Jersey Council on Developmental Disabilities becoming an advocate changed my life. Some of my colleagues watched me grow up in front of their eyes. I would give every one of them a hug. I know standing up in the middle of a board room it’s probably not the most professional thing but I think if I ever really did this they would make an exception. 

    Both of my siblings are next, I have a twin brother with a similar disability because we’re both sitting down most of the time. I’ve never hugged my brother. I am a notoriously non-crier but  I’m pretty sure this one would make me a little Misty to say the very least. Picture it living with someone for over 30 years and never hugging them.  My little sister who is no longer little has now gone off to college and even though she is “normal” she never actually stood me up. I have no doubt she can do it since she has seen it done a thousand times. It’s just one of those things we never got around to. She has never come into the house or left the house without giving me one. I just think I owe her one now.

    Finally, there’s one person I can’t wait to hug: my future girlfriend. It will be such a wonderful experience holding her and letting her feel safe and warm just before kissing her. As with all my blogs, I hope this changes your perspective on the human experience. I dare all of you to go out this week and give more hugs. Somebody will need it even if they don’t say it. Thank you for reading and see you next Wednesday.