Category: inclusion

When Will Progress Be Enough?

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When it comes to people with disabilities, there has been a lot of progress in this country over the past 100 years. For example, people with disabilities are no longer forced to be sterilized, doctors do not recommend that babies born with disabilities such as Down syndrome and cerebral palsy be institutionalized instead of raised at home with their families, employers cannot discriminate against hiring people with disabilities, schools are required to provide a free and appropriate education to all children, and there are many supports available to people with disabilities and their families. 

While this progress is great, it is not enough.

For the past 8 months, I have had the honor of participating in a program called Partners in Policymaking which is hosted by the Missouri Developmental Disabilities Council. Each month, I have participated in Zoom meetings listening to speakers and advocates from across the country share information and experiences about the issues that impact people with disabilities. 

Through this experience, I have learned that people with disabilities in our country still face many obstacles and discrimination and families are still having to navigate systems that are, in many ways, stacked against them.

I have learned that in education, special education has become a place instead of a service. In doing so, it has created segregation in schools that does a grave disservice to all students. Students with disabilities are taught to succeed in a segregated environment and are denied being a part of the “real world” the education system is supposed to be preparing them for. Students without disabilities are taught that students with disabilities are different and cannot do the same things they can and it’s really important to be nice to them. 

I have learned that sheltered workshops serve to keep people with disabilities segregated from the general public by giving them jobs that are carried out in isolation or with a group of people with disabilities(i.e. sheltered workshops). There are given “jobs” such as taking bolts off screws and then putting them on again. They are paid subminimum wages to “protect” their ability to qualify for Social Security and Medicaid benefits instead of paying them a fair, living wage that would allow them to pay for the things they need to live a healthy, successful life. 

I have learned that people with disabilities are stripped of their rights when they turn 18 and are put under guardianship of an adult. The guardianship that is designed to “protect” them strips them of making decisions about where they live, what they can spend their money on, who they can spend time with, if and where they can work, if they can have a romantic relationship, etc. etc. As one speaker told us, prisoners on death row have more rights than a person with a disability under a guardianship. 

I have learned that there are people in leadership positions (i.e. government, healthcare, education, etc.) making decisions that directly impact the lives of people with disabilities who have little or no personal knowledge or experience of living with a disability. Many times the decisions that are made may sound good in theory but ultimately are not in the best interest of people with disabilities.

I have learned that it’s really not that difficult to have a child with a disability. It’s very easy to love him and meet his needs because he is my son and that’s what a parent does. 

I have learned that it is not up to anyone other than the person with a disability himself to decide what he can or cannot do; can or cannot learn; can or cannot achieve. It is up to the people in their lives to ensure that they are able to live the life they want.  

I have learned it is the policies and practices in place that make it difficult to have a child with a disability. 

I have also learned that there are solutions to all of the issues and challenges people with disabilities and their families face. 

In the area of education, there are multiple studies that highlight the benefits of fully inclusive classrooms, one of which is higher academic scores for ALL students – both those with and without disabilities. (Interestingly enough, there are no studies that say otherwise.) An inclusive classroom is one in which all students feel a sense of belonging and purpose; all students are integral in building the community in the classroom; no one is expected to change in order to belong. The community is built around the idea of finding commonalities so that everyone can learn from each other. As far as academic content, it is taught with modifications and accommodations in place to support the success of all students, such as having a co-taught class with a general education and special education teacher. Another benefit of inclusive educational settings is that all students are also being prepared to be successful in the real world. 

I have learned that when people with disabilities are taught and given the appropriate supports, they can be successfully employed and earn a living for themselves. There are services such as  vocational rehabilitation that will work with a person with a disability to help him identify the job he wants and then ensure that he has access to the things he needs to be successful in that job. For some people that might be that they are taught certain skills they will need on the job. For others it is helping to fund the education needed to be able to obtain the job they want. They will work with employers to determine how to best help the person with a disability to be successful. People with disabilities deserve to have real jobs, make real wages, and work within real businesses. 

I have learned that supported decision-making is a much more appropriate approach to supporting individuals with disabilities as they enter into adulthood. Instead of placing them under a guardianship, which removes some if not all of their personal rights, developing a supported decision-making team and plan ensures the person with a disability has as much autonomy as possible over her life. Supported decision-making involves the person with a disability at the center, asking her questions such as: What are your goals? What do you need in order to reach those goals? Who can help you if you need it?  Decisions about the person with a disability are made with her instead of simply for her. 

I have learned that people in leadership positions do not necessarily intentionally make decisions that adversely impact people with disabilities. Many times it is simply because they have no personal experience with disabilities and don’t have the information needed to make more informed decisions. Ideally, they would be actively seeking out that information themselves. However, in reality, I have learned that it is usually up to advocates – individuals with disabilities, parents or family members of people with disabilities, people who have personal and/or factual knowledge what it is like to have a disability – to speak up. To request meetings. To present data. To bring the information necessary to those making decisions so that decisions and policies can be made that are truly in the best interest of ALL people.

I learned these things from specialists in these different fields – parents, teachers, government officials, policy makers, and most importantly, self-advocates. One of the most impactful speakers I had the honor of learning from during this course was a self-advocate named Ken Capone who was born with cerebral palsy. His parents were recommended by his doctor to put him in an institution because of his disability. Thankfully, they did not listen to him and raised their son with the rest of their children. They advocated for him to attend school in the general classroom and he graduated from high school with the rest of his class. He now lives independently and has a full-time job. He has a bill named after him, The Ken Capone Equal Employment Act, which makes it illegal in the state of Maryland to pay people with disabilities sub-minimum wage. I learned all of this by listening to him as he used a head stick to type on an iPad and then had it speak his words aloud. And he was able to do that because his parents focused on his abilities. Because he was fully included in the educational system. Because he was supported in finding a job he wanted and enjoyed. Because he had people in his life that advocated for him and supported him in his dreams and goals.

Again, a lot of progress has been made in the past century regarding people with disabilities in our country. I look forward to seeing more changes being made in education, employment, and other policies so that one day people with disabilities do have equal rights, opportunities, and access in our country. Only then will it be enough.

If you’re wondering what you can do to help ensure that the needed progress occurs, first of all, you have to believe that people with disabilities are valuable and deserve equal rights, opportunities, and access. Next, learn more. Ask questions and be open to answers that challenge your existing views and beliefs. Finally, be willing to speak up in support of people with disabilities.

I hope to see “enough” reached for my son and all those with disabilities sooner rather than later.

The Magic of Acceptance and Inclusion

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A few weeks ago, my parents gave my brother, sister, me, and our families the gift of a Disney cruise to Alaska. There were so many amazing things about the entire trip – especially getting to have our entire family together for a week. However, there was one experience that stood out for me and I will never forget it.

On the third day of the cruise, the ship docked in Skagway, Alaska. We spent the morning driving up into the mountains and enjoying seeing the beauty of the mountains, lakes, and waterfalls that surrounded us. And by we I mean Tyson and me. Josie and Moses were bored to tears.

That afternoon, Tyson and Josie went ziplining so I took Moses back to the ship. We went up to the pool deck where there was a place for him to get some chicken strips and for me to get an adult beverage.

While we were sitting at our table, one of the ship’s lifeguards walked by. He saw Moses and said, “Hey buddy! How are you?”

After a morning of sitting in a vehicle bored out of his mind, Moses wasn’t in the best of moods, so he responded with a very firm, “No.”

Undeterred, the lifeguard continued to try to talk to Moses and get him to engage with him. Also undeterred, Moses refused his efforts.

The lifeguard said, “What’s your name?” (Side note – That he asked Moses directly what his name was instead of asking me earned this guy a gold star in my book. He did not assume that Moses couldn’t or wouldn’t answer him. It was awesome.)

When Moses didn’t answer him, I said, “This is Moses. He’s had a long morning and is obviously pretty cranky.”

The lifeguard laughed and said, “Give me 10 minutes and I’ll win him over.”

Well, it had already been at least 3 minutes, so I figured if this guy wanted to be rejected for another 7, that was his choice.

He gave it a good effort for a few more minutes and then said, “Okay. I’ll leave you alone now, Moses.”

As he started to walk away, I said, “Moses, do you want to tell him ‘bye’?” At that, Moses turned and gave the lifeguard a big wave and “Bye!”

A smile lit up the lifeguard’s face and he said, “Yes! I knew I could do it!” He came back over and asked for a high-five and a fist bump, both of which Moses gladly gave him.

Four days later, we were at sea on our way back to Vancouver. Josie had been waiting all week to go down the big waterslide on the ship, so she got her swimsuit on and went up the stairs to the top of the ship and where the waterslide started. There was a monitor on the deck where we could see when it was her turn so we could be ready to watch her as she came down the slide. Tyson and Moses missed her first run, but they were there for the second. When we saw that she was next, Tyson took Moses over to where he could watch her come down.

When she did, we all clapped and cheered for her. The lifeguard on duty turned and said, “Moses! Hey buddy! Do you want to do it?”

I’ll be honest, I had totally forgotten about the lifeguard and his encounter with Moses 4 days before. But he hadn’t. He even remembered his name.

Moses answered with a big nod of his head and a clear “Yes!”

Tyson and I looked at each other. Moses loves to slide. And he’s gone down some pretty big ones. But none as big and as long as this one and a waterslide at that.

I asked Moses, “You want to go down the waterslide?”

He again said, “Yes!”

Tyson looked at the lifeguard and asked, “Can he go down it? Is he old enough?”

The lifeguard said, “Sure he can go down it! It doesn’t matter the age. He just has to be 36″ tall, which he is, so he can do it.”

So I ran down to our room, grabbed Moses’ swimsuit, and made my way back up to the 9th deck as quickly as possible. Tyson got Moses changed into his swimsuit and then took him over to where the lifeguard was standing. He told him that he could walk up to the top with him or he could go with Josie, who was standing right there waiting. He said, “Either way, I’ll be right here when he comes down to help him if he needs it. He’ll be fine.”

With that, Josie took Moses’ hand and led the way up the stairs to the top of the slide. Tyson and I stood watching the monitor anxiously waiting to see the top of Moses’ head. A couple of minutes later, there he was, impatiently waiting his turn with Josie doing her best to keep him in line.

When it was finally his turn, he stepped over the lip of the slide entrance, sat down, and pushed himself forward. No hesitation. No fear.

When he came sliding down into view, he was backwards and on his belly. He hit the water at the end, sat up, and was met with cheers from my parents, my sister, Tyson, me, and the lifeguard. Just as he promised, the lifeguard was right there waiting for Moses. He clapped for Moses, gave him two big thumbs up, and high-fived him as he walked to the end. As Moses got out, the first thing he did was say, “Again!”

Sliding down to his own personal cheering section.
Hi-five from the most amazing lifeguard ever.

I lost count of how many times Moses went down the waterslide that afternoon.

If it hadn’t been for that lifeguard, I don’t know that Moses would have gone down that waterslide. It wouldn’t have been because he didn’t want to or because he couldn’t. It would’ve been because Tyson and I would have been too nervous to let him do it. That waterslide was really big and there wasn’t the option of one of us going down with him.

Some people may be thinking, “That’s the magic of Disney.”

I disagree.

This moment was brought to us by the magic of an individual practicing acceptance and inclusion. The magic of looking past stereotypes and focusing on abilities instead of limitations. The magic of seeing a person for who he is rather than his diagnosis.

There is no doubt in my mind that God made sure that our paths crossed with that lifeguard. He knew that some of us, including myself, needed the reminder that it’s not up to us to decide what Moses is or is not capable of. Moses can do that just fine on his own.

Us or Them

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I wonder if other parents of kids with developmental disabilities ever feel the way I felt tonight. 

Moses’ IEP meeting is coming up to determine his placement going into kindergarten. I’ve already advocated for him to be able to go to summer school (or at least give it a try), and I’ve been laying the groundwork for him to be in the general education classroom as much as possible for months now. There’s so much evidence in support of the benefits of inclusion in education – academically and socially for both kids with and without disabilities – that I feel like there’s no reason for him to ever not be in the general education classroom. 

And yet I know that the biggest barrier that we will face in achieving that is the mindset that because children with disabilities don’t always learn at the same pace and/or in the same way, then they should learn in a separate setting. It’s touted as being what’s best for them, although I haven’t been able to find any research to support that claim. 

Anyone who knows Moses knows that he has the ability to light up a room. He has a beautiful, playful personality and is the most determined little boy I have ever met. His brain is a sponge soaking up all the things that are going to help him lead his best, most successful life. He has so many gifts that he brings to this world and it seems like he’s wanted. For the most part.

Until it comes to education. Then it’s like he’s already been weighed and measured and has been found wanting based on his medical diagnosis and evaluation results. 

Nevermind that he has been absolutely thriving in his general education early childhood classroom. But yet now that he’s going into kindergarten, it’s being doubted that he can continue to do that. 

I think the hardest part for me is when I feel like he’s being doubted by people who know him and/or are in education and are supposed to support inclusion rather than integration or segregation. It’s hard when I feel like I have to advocate for inclusion with people who know Moses and how amazing he is, and yet I still find myself having to explain the value of him being in the general education classroom 100% of the time. 

Why do I have to explain that he can and wants to learn? Why do I have to explain that he can and wants to have friends? Why do I have to explain that he can and wants to be part of the classroom community? 

Why do I have to explain that as soon as he’s not allowed to be a part of the community that is built in the classroom within the 7 hours that they’re there from the first day of school until the last day of school, everything will change for him. He will at that moment go from being “one of us” to “one of them”. 

Tonight as I was laughing with Moses and just soaking up the joy he can exude, I suddenly had the thought, “Why do I want to share him with others so badly, especially when it comes to school? Why not just keep him all to myself?”

Part of me wants to say, “Fine. I’ll keep him to myself. I’ll teach him and explore with him and laugh with him. I’ll be the one to challenge him and encourage him and watch him experience success. I’ll be the one to help him realize how much he’s truly capable of in this life.”

But the other part of me knows that that is my exhaustion, frustration, and hurt talking. Advocating for inclusion is hard work and I’m learning that you don’t get to take breaks. Keeping him to myself might be easier, but it wouldn’t be fair to him or the people who would be missing out on getting to know him and to learn from him. 

Because the real kicker in all of this is that Moses has more to teach all of us than we could ever hope to teach him.

Which then begs the bigger question: Who would benefit more from inclusive classrooms? Us or them?

Call It What It Is

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A couple of weeks ago, I wrote about how I would love for people to stop using the term “special needs” when referring to Moses or other people with a disability. The next week, a couple of my friends at work asked me what I would rather people say if not “special needs”. 

Their question took me by surprise, but I was even more excited that after they read my post, they didn’t just dismiss my thoughts. It got them thinking and they were genuinely curious about what to say instead. (Yay!)

I realize that I left that last post unfinished because I did fail to offer an alternative for saying “special needs”. 

So what would I prefer you say when referring to Moses having Down syndrome or a disability? 

Exactly those words. 

‘Down syndrome’ and ‘disability’ are not bad words. They don’t mean bad things. They aren’t wrong to say in any way, shape, or form. So to not say them and try to sugarcoat what he has with something that sounds “nicer”, such as “special needs”, there is the implication that the other words are somehow bad or wrong. 

That a disability is a bad thing. 

That it’s bad to have Down syndrome.

That there’s something wrong with the person as a human being.

The implication may be subtle and seemingly harmless; however, the impact can be quite significant to those with Down syndrome or another disability. 

Do I think that my son is special? 

Absolutely. 

Moses is special because he is fearfully and wonderfully made exactly the way he’s supposed to be. (Just like you are.)  

HE is special, not his needs. 

I understand it might be hard to get out of the habit of saying “special needs”. It might seem like an inconvenience that isn’t really that big of a deal and not worth the effort. 

However, it is a big deal to those that fight against the stereotypes and challenges that come with being labeled “special needs”. It’s a big deal to the parents of children with disabilities that want nothing more than for their kids to be valued and accepted for exactly who they are. Please believe me that your effort is very much appreciated and does not go unnoticed.

So if it’s relevant to the conversation to include the fact that a person has a disability, then just say “disability” or the specific name for it, such as “Down syndrome”. You don’t have to whisper the words or look around to make sure no one outside of your intended audience heard them. I pinky-promise you that they are not bad or hurtful words in any way, shape, or form. 

Just call it what it is.

Stop Saying “Special Needs”

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“Special needs”

Hearing that phrase is like hearing nails drag across a chalkboard. (Does anyone even remember what a chalkboard is and that torturous sound?)

As Moses gets older, I understand more and more why individuals with disabilities and parents/caregivers of individuals with disabilities do not want that phrase to be used to describe them. 

I saw this video a couple of years ago at an event for moms of kids with Down syndrome:

At that point in my journey, I remember thinking something along the lines of, “Huh. I never thought about it like that.” And then I didn’t give it a lot more thought. 

Now that we’re starting to have conversations about Moses going into Kindergarten and are faced with the reality that the amount of time he gets to spend in the general education classroom is going to potentially be impacted by his “special needs”, I’m definitely giving it more thought.  

“Special needs” implies that his needs are so vastly different or complicated that they justify excluding him from the mainstream environment under the guise of “supporting” or “accommodating” him. 

What are his “special needs”?

Well, he’ll need to go to a speech therapist. Which other kids in his class will likely also need to do. 

He’ll likely need more redirection to stay on task during lessons and assignments. Which other kids in his class will also need. 

He’ll probably need help opening his milk carton at lunch. Which probably about half of the other kids in his class will need help with, too. 

He’ll need help tying his shoes if they come untied. Which, you guessed it! Most of the other kids in his class will need help with that, too. 

He’ll need love and patience and understanding from his teacher. Wait. So will every single one of his classmates. 

He’ll need opportunities to learn and practice social skills that will help him develop positive relationships with his peers. 

The majority of what Moses will need to be successful in the classroom are no different than most, if not all, of the other kids that will be in Kindergarten with him. Will he likely need some additional supports? Yes. But not to the extent that he’s out of the general education classroom more than he’s in it.

Some of you may be thinking to yourself, “But really what’s the big deal of saying ‘special needs’? It’s not offensive, right?”

No, it’s not necessarily offensive like the r-word is.

But it is a problem because it puts limitations on what individuals with disabilities have access to. It’s a problem because it implies that kids, or even adults, with a disability – say, Down syndrome – have needs that are so different or complicated that they should be kept separated from those with “normal” needs. 

The use of the term “special needs” tricks parents, teachers, administrators, and society into thinking that because of having a different level of ability and having to do some things differently or with support, it means that those kids aren’t able to be in the same classrooms as typically developing students. That they need to sit at a different table. That the bar for achievement should be set lower, if it’s even set at all. 

Moses doesn’t have special needs. 

He has the same human needs as every other human being on this planet. 

Again, yes, there are some areas, such as speech, that he needs extra support. Yes, there are some things that will take him longer to learn than others. 

However, none of those things are grounds for him to ever not have a seat in the classroom or at the table. He has so much to contribute to this world that I’ll be damned if I’m going to let the misconception that he has “special needs” ever be grounds for him being denied access to the spaces he has the right to occupy. 

When we stop using the phrase “special needs”, we are less likely to see people with disabilities as almost fundamentally different as human beings in some way. We will be less likely to use it as an excuse to exclude people with disabilities from spaces they have the right to occupy. We will stop faulting those with disabilities for not being “normal”. 

Perhaps those of us who are “normal” could do a better job of remembering that we have the ability and responsibility to respect that literally everyone is different in their own way and deserves to have their human needs met without question. Perhaps when we do that, the needs of those individuals with disabilities won’t seem that different at all.