Tag: Advocacy

Choose Your Focus

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On the way home from school today, Josie suddenly asked me, “Would it be hard if I had a disability, too?”

Since I was completely caught off-guard, I asked her, “What do you mean?”

She answered me, “Would it be hard if I had a disability like Moses?”

I thought for a few seconds and gave her my honest answer: “No, I don’t think it would be hard. We would do whatever it was that you needed to live your best life. And we would love you just like we love you right now.”

At that point, we had pulled into the garage. She got out and went inside. By the time I got Moses out of his car seat, gathered all of my stuff, and got inside, the conversation was clearly over. She had already unpacked her backpack, gotten herself a snack, and turned on the TV.

To be honest, I didn’t think anything else about the conversation, either, as I started putting my things away, unloading the dishwasher, and mentally preparing myself to clean the shower in my bathroom. (I would rather dust all day long than clean that shower.)

A few hours later, Josie was across the street playing with her friend, and Moses and I took Opal for a walk. Not long into the walk, he reached over and grabbed my hand. Every few steps he would stop, squat down, count to three, and then he would jump up and I would pull a little to help him go even higher. He loves this game and the laughs we both get out of it are the best.

After a while, he stopped jumping and we just walked hand-in-hand. At one point, I looked down at him and he looked up at me and smiled. It was one of those smiles that shines of pure happiness and love. One of those smiles that catches your breath and your heart.

That’s when I thought back to the question Josie had asked me earlier. And I thought to myself, “This isn’t hard.”

Yes, having a child with a disability comes with challenges. And if I focused on the challenges and dwelled on them day-after-day, then I would surely say it’s hard to have a child with a disability.

However, when I watch my son laugh and play and enjoy this life he’s been given, I find it difficult to see the hard. If he’s not dwelling on the challenges he has, then why should I? What good would that do him? What good would that do me?

There are times to focus on the challenges. When they are having a negative impact on him, they need to be addressed. There are some instances when it is in his best interest to be proactive and attempt to address potential challenges before they arise.

I do the same thing for my child who doesn’t have a disability.

But that’s not where I choose to keep my focus.

Ever since I found out my child was going to have Down syndrome, it has been important for me to remember that I have a choice about how I look at things and what I focus on. And I choose to look at my son and see the strength and determination and joy and love that he has. I choose to look for the solutions to the challenges he faces and focus on implementing them. I choose to advocate for what will help live his best life rather than accept certain things as-is.

There are times that it would be easier to focus on the challenges. To focus on the hard. But if he’s not choosing to do that, then why should I? Why should anyone?

I would much rather focus on that smile that catches my heart.

What do you choose to focus on?

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.

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?

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. 

Refusing to Stay Silent

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This morning while at the doctor’s office for my yearly checkup, I was enjoying the conversation of my nurse and we got to laughing about different things, and then somehow the conversation took a turn for the worse and somehow led to her saying something along the lines of “People get offended by anything these days.” 

In my mind, I was disappointed that the conversation took that turn because I don’t believe it has anything to do with “these days”. I believe that people are actually getting offended by the same thing that has been offending people for decades, if even centuries. The difference is that now people are not willing to let the offensive words, pictures, or remarks slide. People are not willing to be silenced by the accusation or fear of being accused that they are “too sensitive”. People are not willing to continue to be offended by others simply because they personally do not see the offense.  

But what really had my mind spinning was after she said something about a current topic people are finding offense with. She followed her commentary up with, “It’s so retarded.” 

My first thought was, “No, she didn’t.”

But she did. And as I sat there half-listening as she continued to talk, my mind was racing trying to decide if and how I should address her use of the r-word:

“She just said that people these days are too easily offended, and did I want to be one of those people, did I?”

“Should I even still bother saying something? She’s talking about something else now.” 

“WHY DIDN’T YOU JUST SAY SOMETHING???” 

“I have to say something, but at this point, how?” 

“I don’t want to upset her or make her uncomfortable, but her words upset me and I’m uncomfortable that she used them. Is her comfort more of a priority of my own? Of my son’s and others with developmental and intellectual disabilities? Of their parents?” 

“She’s been so nice. Do I really want to call her out on this?”

When she moved to take my blood pressure and there was a brief pause, I said to her as calmly and respectfully as possible, “You know when you said something about people being offended so easily? Well, then you used the word ‘retarded’ and that actually does offend me because my son has Down syndrome.”

As was illustrated for me today, I know that there are people who continue to use the word retarded despite knowing it’s offensive. Much like the n-word. I would say that perhaps they continue to freely speak it because they haven’t heard that it’s offensive and believe it’s still an appropriate adjective to use in describing something, but I just have a really hard time believing that. (Unless they’re like 100-years-old, then maybe. Otherwise, no.)

I also know that there are a lot of people who recognize and agree that using the word ‘retarded’ is offensive and shouldn’t be used. These are the people who have likely erased it from their vocabulary. I would also venture to guess that a lot of these people cringe when they hear someone else say it and do exactly what I’ve done so many times in the past:

Nothing. Keep your mouth shut. Silently congratulate yourself for not using that word.

I get it. Addressing the use of an offensive slur can be hard and uncomfortable no matter if it’s a loved one or a stranger. There’s a chance that you could find yourself on the receiving end of some more offensive language when you’ve done nothing to deserve it. There’s a chance that you could be ridiculed or even ostracized. There’s a chance you could jeopardize a relationship.

However, not addressing it is giving your silent approval. Yes, in some cases, silence can speak volumes in letting someone know you have been wronged. However, in a situation like this, silence is the equivalent of saying,”Hey, you used the r-word and I find that really offensive, and a lot of other people do, too, but it’s okay if you want to keep saying it.” 

Silence is complicity.

– Albert Einstein

I have to admit that one of the reasons I was able to speak up today is because I’ve been mentally preparing myself since the last time I didn’t speak up. I’ve literally been practicing different ways to respond in my head for a couple of years now because I refuse to stay silent about it ever again.

How can you prepare yourself for speaking up and calling someone in when they have said or done something offensive?

  • Commit to speaking up the very next time it happens.
  • Practice some things you could say: “Don’t you think it’s time to find a new word?”; “You know, that’s a really offensive word to a lot of people and I don’t think you’re wanting to offend anyone, right?”; “Using that word makes you sound really insensitive/uneducated.”
  • Show a picture of Moses or another person with Down syndrome or intellectual disability and ask, “Would you say that to this person’s face? If not, you might want to consider saying it at all.”
  • Have an exit plan. Be ready to say that you’re not comfortable being in a conversation with someone that uses that word and excuse yourself from the conversation.

In the end, you have to just rip the bandaid off and say or do something. A wise person recently reminded me that how the person or people respond to you standing up for an issue is not your concern. You have no control over whether or not she will listen respectfully or fly off the handle. And whatever her response is really isn’t about you, anyway. It’s about her. Her values, her respect of others, her willingness to listen to understand, or a lack thereof. 

I have to give the woman today props for her response today. Did she apologize? No, she didn’t. She also didn’t shut down or get defensive. She was a quiet for a moment while she finished taking my blood pressure, and then our conversation resumed. She even asked me if I knew Moses had Down syndrome before he was born, and I was more than happy to answer her question.

As I left there today, I like to think that she’s going to reflect on our conversation today and reconsider her use of the r-word. She might, and she might not. What I know for certain is that I left there today having advocated for my son and others who are not always able to speak up for themselves. And I have to say, refusing to keep my mouth shut feels really, really right.

Morals, Not Politics

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“But we have retards…I’m sorry, I know that’s an offensive word, and I’m not trying to talk down on people with Down syndrome, but that’s what these people are. These people are so stupid and ignorant they cannot put something common sense in place…”

Marjorie Taylor Greene, United States House of Representatives (GA)

This comment was made in a video by this person a few months ago. I first learned of it a few days ago. After I watched and listened to it a couple of times, I decided I wasn’t going to say anything because I don’t like getting into politics. I don’t even know this woman and she doesn’t represent me or my state so why bother, right?

But the more I’ve thought about it, I know I have to say something.

For me, it has nothing to do about politics and it has everything to do with morals. It has nothing to do with being a Republican or a Democrat and it has everything to do with the standard of what is and is not acceptable in our present-day society.

First of all, I don’t care who you are and I don’t care what you are talking about. If you know a word is offensive and you choose to say it anyway, saying ‘I’m sorry’ doesn’t remove the insult from the word you said. For example, if I said to you, “No offense, but you’re really ugly.” Does the first part cancel out the second? No, it doesn’t. The words ‘retard’ and ‘retarded’ used in relation to describing a person or group of people have been recognized as extremely offensive for well over 10 years. I’m pretty sure that’s an ample amount of time for anyone born before 2009 to remove it from their vocabulary when referring to a person or group of people. Let me be clear: Saying “no offense” before or after the word ‘retard’ or ‘retards’ does not make it inoffensive. Ever. Pointing to a group of people who are still fighting to have their worth as human beings recognized to illustrate who you think of when you say the word ‘retards’ only serves to compound the offense.

Secondly, did you notice that she went on to identify a group of people that comes to her mind when referring to ‘retards’? Who she compared those who are “so stupid and ignorant they cannot put something common sense in place…”? Yep, people with Down syndrome. Someone like my son. Someone like my Goddaughter. People like our friends that have Down syndrome.

Moses Moyers, a 4-year-old with Down syndrome as well as common sense.

Here’s where I’m going to bring in politics. I am so tired of hearing people say things like, “Well, he said that because he’s a Republican/Democrat.” A political party doesn’t speak, people speak. A political party has ideals and views, but people choose what words come out of their mouths. This person didn’t say what she said because she represents a certain political party. She said it because she is a human being who thinks it’s okay to demean one group of people by referring to another group of people to serve as an example of her offensive slur.

What bothers me the most, though, is that there are going to be some people who know me and claim to care about my son yet will stay quiet about this elected official using the word ‘retards’ as well as calling out people with Down syndrome to give illustration to the word. They will stay quiet because they identify with the same political party that she is a part of or because they agree with the issue she was trying to make a point about. I honestly don’t care if they are a member of her party or if they agree with her stance on the issue she was talking about. I don’t care. What I care about is excusing and/or agreeing with her use of words and her belief about people with Down syndrome.

During the past few months, I have witnessed an alarming number of people who excuse or even support immoral and unethical behavior in the name of a political party. It frightens me that people would allow a political party affiliation to come before God’s commandment to love thy neighbor as thyself. On both sides of the political spectrum I have seen and heard so much hate and disrespect which is somehow deemed acceptable in the name of party loyalty. It’s as though somehow political parties have come to set the moral standards for their members instead of vice versa. I personally choose to stay out of political discussions because of their negative nature, even among people who identify with the same party. However, when that hate and disrespect extends to people who didn’t ask to be involved in the narrative, I am going to speak up.

I’m not asking for anyone to jump party lines to denounce the words of this person. What I am asking is that you understand that on a moral level what she said was so incredibly wrong and offensive to so many people. Some of which I’m going to guess she’s claiming to care about or represent. But without words and actions to back that up, then her claim is only that. You can be a member of a political party and not support some of the people and practices associated with it. (Trust me, I know this from experience.)

Last night I prayed for the person who said these words. I also prayed that others would not see her as an example to follow. I prayed for the words to address this issue in a way that was respectful yet firm in repeating myself and countless others in saying that using the words ‘retard’ and/or ‘retarded’ to describe a person is offensive and inexcusable. I pray that you and your sense of morals will not support that.