New Horizons Un-Limited

03/24/2026

"People with disabilities are routinely socialized to be grateful before they are supported. Grateful for partial access. Grateful for delayed accommodations. Grateful for inclusion after decisions are finalized. This is not courtesy. It is conditioning. It preserves institutional comfort while shifting the burden of adaptation onto the person who needs access."

Saying no is a vital form of disability advocacy, helping individuals protect their time, energy, and expertise while holding institutions accountable. In this feature, Marcus Johnson explores how setting boundaries, refusing unpaid labor, and resisting the need to “prove” disability are not only acts of self-care but also essential tools for systemic change. Read the full article at https://ablenews.com/saying-no-is-disability-advocacy-why-people-with-disabilities-must-stop-over-explaining-and-start-setting-boundaries/

03/23/2026

7/7 “Believe it or not, I'm a disabled person that's trying to date. People wonder, “Why do you want to do that? You have enough on your plate already just trying to function, and then you want to add an extra layer of complexity and try to date?” It's so hard for people to understand. Then I ask, “Well, why do you want to date?” Companionship, right? You want somebody to come home to.”

Honestly though, dating is a nightmare. It's so hard for guys to just get over themselves and look at who's sitting in the chair. It's taken me a long time to get to this point, because I never thought I was a catch.

I've sought out the services of a dating coach. He's taught me how to feel better about myself and how to look at myself as an individual. He's like, yes, you're in this chair, but that doesn't speak to who you are as an individual. That just happens to be something you're sitting in and you use to get around. If they can't see that, as a potential mate or a partner, then you don't need them.

I've gotten better at having my standards and not deviating from them. Someone will come and he will meet these standards. He will rise to the level of these standards.

When I was in therapy we talked about changing my circumstances. But, there are some circumstances that are never going to change. No matter how hard I work, not everything is going to go my way. Instead of trying to change them, I am working on finding some kind of acceptance?

That doesn't mean that I have to be happy about it. I just want to be content. I mean, it’s 2026 and people with disabilities still can’t get married without losing benefits. There are still some places that don't have elevators and are not wheelchair accessible. There are still steps to get to a bar. There are no usable bathrooms in some places.

It's time to dispel the myth and let the stigmas die for lack of a better phrase. I mean, we are forced to live in a society that wasn't built for us, wasn't prepared for us, and then, refuses to change for us.

I often hear things like, you're such an inspiration. I hate that word because my being here, my functioning, is not meant to make you feel all warm and cuddly inside. No, that's just me trying to function. That's just me trying to survive."

03/22/2026

6/7 “I don't want to go into a residential facility. That's one of those hard discussions that I've had to have with my service providers. I've had to make it clear. I am too high-functioning for that. I don't like being told what I have to do with my money.

Once you're residential, they get control of your money. They tell you how much you can spend or when you can spend it. There was a time where I was given an allowance, but I don't need an allowance anymore. It would be like going backwards? I have bills to pay. I pay rent. I live on a budget. People are surprised that I pay rent, but, my mother said, “I want to prepare you to be a functioning human being for when I'm not around.”

I talk to parents of the people in our population. I tell them, “You need to prepare them as much as you can.” I try to tell them very gently, “There's going to come a time where you can't, or you won't be around to help. You have to make them as independent as possible.”

Residential is the first thing people think of as far as, aftercare, when a family caregiver passes away.

There are so many functioning people in nursing homes and residential facilities simply because there is nowhere else for them to go. I see people that were fully functioning adults when they entered residential become more reliant on equipment. Their mobility changes. They stop moving. They stop walking. They stop standing.

I look at the people in our population and I always wonder if they can do more than they think they can do? I'm not saying to go out there and do something crazy, like try to dress yourself or drive a car! Start with something small.

I tell parents, “You don't know what they're really capable of until you push that envelope a little.” I think there are people that are not living up to their full potential because they get comfortable with other people waiting on them.

When that person is not there anymore and you don't know how to function on your own - that just leaves other people in control. At least for me, I don't like that. I like to be in control as much as possible. I know everybody's not like me and may not have the same mindset.

I think that if we want society to accept who we are as individuals, we have to start with ourselves first."

03/21/2026

5/7 “Right now, my mom doesn't have a will. I told her, “We need to have these conversations while you're alive, so it's on paper and it's official. It's not enough that I know how to advocate. If you don't write it down, it really doesn't mean much because your signature's not there.”
I found out that my mom had me down as a beneficiary for one of her accounts when she passes away. I said, “Mom, I appreciate it, but you have to know that if that money is given to me, that's going to put me over the current $2000 asset limit. It will kick me off of Medicaid. It will kick me off of everything else that I've had since I was a young child.”

The state of Illinois has home based services through the Medicaid waiver. I “won” my place in the program at a very young age through a lottery, because spaces [for home care] are few. It's one of those things that if you lose it, it is very difficult to get back, because you go to the back of the line, and it's basically like starting over again.

I’m not sure what's going to happen when she's no longer with us. The goal is to get my own apartment that has access to transportation to and from the city. I am on a list for subsidized housing. Unfortunately, it's a long list. With the current administration making cuts to these programs, it's making the list even longer.

Transportation is also on the chopping block. If I didn't have access to door-to-door transit, I would basically be a shut in. That's how I get to and from the doctor. I wouldn't have access to the gym. I wouldn’t have access to go out to dinner with friends on occasion.

It's scary not knowing exactly where I'm going to end up or when I need to be at a certain place. These unknowns have been put on my sisters. They all have lives of their own. I don't want to put that responsibility on them, especially if I know that I can take care of myself with the proper services in play, I would rather take care of it now than deal with it after my mom's gone.

I started looking into a special needs trust. If my mom were to leave me anything, that money would be safe from Social Security in a trust. [Social Security and Medicaid have a $2000 asset limit. If you have more than $2000 in assets you will lose eligibility to Medicaid.]

Little did I know that it is very expensive to open up a trust. It costs thousands of dollars."

03/20/2026

4/7 “I was born in 1985. There was nothing really around, as far as services, when I was born. The doctors didn’t know what to expect. I wasn’t supposed to make it through the night. They had actually told my father to come and say goodbye because they didn’t think I was going to make it.

And here I am, 41 years later.

My doctors are retiring and they don’t know what to do with me. They’re like, “You’re 41 and still active. You’re still physically able to do a lot more than what we expected.” And they look at me, like, “What are we supposed to do?” I’m looking at them, like, “You’re the doctor. I’m the patient. Tell me what I’m supposed to do.”

So, it’s hard. It is getting better now with technology. But, that is also making the issue even more complex. Medical advances are happening and people are living longer. As I said, there is nothing in place because they didn’t expect us to be here. When you think of CP, you think of the kids, and the pediatric side of it. Once we turn 18, they kind of expect it to stop.

It’s quite the opposite. Our needs get greater as we age. We need more equipment. We may need more care. We need access to healthcare. Especially as a female with reproductive care, gynecological care, things like that. That’s something that nobody has talked about. Nobody has even put in the work yet! What are we waiting for?

Are we waiting for something bad to happen because someone didn’t have access to the care that they needed, because no one ever thought about it!

Those are the kinds of issues that I deal with every day! I go to the doctor and I can’t get on the scale. I can’t stand long enough to get on a regular scale. So how do you weigh me and my chair, and then weigh me without the chair?

It’s not that out of the ordinary. Especially with the aging baby boomer population. Advances in accessible medicine is going to benefit everybody eventually. It’s going to affect you sooner or later. God forbid something does happen to you, you could become disabled in a matter of seconds.

That’s when you start asking all the questions. What am I going to do for care? How am I going to get around? What services do I have available?”

03/19/2026

This is fantastic news and a reminder that state level advocacy is just as important as federal advocacy. Please join us and the Children's Advocacy Network in thanking our state legislators and Governor Evers!

Thanks in large part to your continued advocacy over the last 6+ years, the Legislature has passed the bill to extend postpartum Medicaid coverage from 60 days to 12 months. Please join us in sending a thank you message to Governor Evers and...

03/19/2026

3/7 “I use a power wheelchair in my home and to access the community. It costs as much as a car. If it were to break down and need repairs, I could not afford to pay for that out of pocket.

It costs $500 to get new batteries [for my chair]. There was one time that I needed new batteries and my insurance denied new batteries because they considered it a luxury that I didn’t need.

If I don’t have new batteries, the chair doesn’t work. Where am I supposed to sit?
I mean, I could literally go from sitting to laying in bed all day. That’s where I’m going to end up. That’s where bed sores start and an infection begins. It’s never one little issue.
It’s a big picture that you have to look at every day just to survive.

I think a lot of people, particularly the people who are fighting against Medicaid funding, don’t understand what Medicaid does for people. They keep saying, “Well, it’s for the most vulnerable.” Yes, but once you start cutting money, they’re going to start cutting those optional services and they’re already denying batteries for a wheelchair.

So what else do you think they’re going to start denying?

They’re going to start denying caregivers, and these people are not going to get out of bed anymore. They’re not going to get dressed. They’re not going to get a shower.

Until it affects that person directly, they don’t get it. It’s either they don’t understand or they don’t want to understand because they don’t want to look past themselves and think about other people.

This administration does not care about people with disabilities. They are making it harder for people with disabilities to live, to thrive, to function, to survive. They see us as a burden. Everything society tells us that we’re not, this administration is reinforcing those beliefs.”

03/18/2026

2/7 “Income complicates things when you have caregivers. There is so much red tape we have to go through, just to survive. That is the sad thing about the system; it’s designed to keep you in poverty. You cannot have a professional career, because you need the healthcare.

I rely on Medicaid to pay for my caregivers. People think, “Oh, you live at home, your mom takes care of you.” Yes, she does, but she needs income from somewhere. She has bills to pay. It’s a hard job. It’s a physical job. It’s an emotional job. It’s a mental job. For some, it’s a full-time job. My mother gets no vacation time. She gets no sick days.

It’s a lot to juggle. You’re managing multiple schedules at the same time, because you have to make sure you have a caregiver there to get you out of bed, to get you dressed, to get you on the bus, to get you back in the house.

My parents are aging. They are not able to assist me as much as they used to. I’m trying to do more on my own. When I’m not doing my nonprofit work, I’m in the gym. I’m getting stronger. I’m also seeing a physical therapist.

I am not a very complex person, but society makes me complex in the sense that I’m still seeing doctors that I’ve had since the age of two. They don’t know where to send me because no one specializes in taking care of adults with CP or physical disability. They don’t know, as far as the lifespan, what to expect.

There are different types of cerebral palsy. I have spastic quadriplegia because it affects all four limbs. You can’t really see my legs right now, but I am fighting against them. They want to tighten up. They want to straighten out, and I’m fighting to keep them bent, so I can sit up straight. That’s basically how my day goes. I am actually fighting against my body to get it to work.

I don’t like to stay home. I am not a homebody. It’s times like this when it’s so cold that I’m not able to get outside. People don’t shovel. It’s slippery. In a wheelchair, you start to slide everywhere. So yeah, it’s rough.

Thank goodness, for things like Zoom and video chat and Google Meets and things like that. I’m able to stay connected with people when I literally can’t go outside.”

03/17/2026

Alt text: Election 2026 Important Dates

Apr 7 Wisconsin Spring Election. Vote for WI Supreme Court Justice, and many other local positions.

Aug 11 US Partisan Primary. Vote for your party's candidate: US House, State Assembly and Senate, Governor and more.

Nov 3 US General Election. Vote for US House, State Assembly and Senate, Governor and more.

NOW Check your registration and request a mail in ballot. visit https://myvote.wi.gov/en-us/

Polls are open 7:00 am - 8:00 pm on election days.

03/17/2026

1/7 “I do not have a traditional 9 to 5 job. I am a lifelong volunteer. I have a Master’s Degree from Saint David University in Education, specifically in the area of school counseling. Unfortunately, we are a very marginalized community that isn’t given many opportunities as far as employment, or other areas. I’ve never really been able to use that degree per se.

After I graduated college, I had a lot of time to sit in my feelings, and I became very depressed. I went from having a day-to-day structured plan to having nothing to do. I think that is important to discuss. People see a person with disabilities smiling, but they really have no idea what’s behind that smile. They have no idea what they have had to struggle with going from childhood to adolescence to adulthood. Once a person ages out of the school system, there really is nothing there for them to replace it.

I do volunteer with a nonprofit known as the Association of Horizon. We are an all-volunteer organization. Our cornerstone program is Horizons Camp, a summer camp for adults with physical disabilities. It’s a group effort, comprised of many individuals and many donors. They give up their time and money to help us raise funds and awareness.

We give people with disabilities a genuine summer camp experience - swimming, cabins, campfires, nightly cookouts. We host about 120 individuals with a variety of physical disabilities - cerebral palsy, spina bifida, muscular dystrophy. Our campers are some of the smartest people I know. They are each very articulate in their own way. Some communicate with devices. Others can communicate verbally. Each of them is so smart, and so giving and so funny.

As I said, we are all volunteers. I am not paid. It is a work of love, not money

It’s difficult to make a steady income where it would not affect the [Medicaid] benefits that I rely on to live. We’re not just sitting at home waiting for that monthly check to arrive. We want to do more, but we’re not allowed. The instant we do more, the government says, “You’re making too much.”

03/12/2026

Please read the full statement from the Wisconsin Disability Vote Coalition on how The SAVE Act and MEGA Act will disenfranchise millions of voters with disabilities.

Key changes include:
- Eliminating online registration
- Eliminating mail-in ballots
- Requiring a birth certificate that must match your current name on your ID. If you've changed your name you must show proof of your name change
- Requiring voters to present these documents in person

The full statement can be read here: https://tinyurl.com/8be45bdh