Tomorrow Is Too Long to Wait for Inclusion

No Excuses for Lack of Reasonable Accommodations in Mainstream Schools

No Excuses for Lack of Reasonable Accommodations in Mainstream Schools

By Emily Ladau

Sending me to mainstream public school was never a question in my parents’ mind, even though I was born with a physical disability. I’m grateful to have grown up receiving a good education along with my non-disabled peers. But while my experiences were generally positive, there were times when my parents and I were made to feel that my disability was a burden to my school district, because my needs for reasonable accommodations were either avoided or outright rejected.

Unfortunately, I’m hardly alone in this. Mainstream schools can all too often be quick to supply a stream of excuses when met with requests for reasonable accommodations by students who have an Individualized Education Plan (IEP) or Section 504 Plan in place. Not only is this unacceptable, but also in some cases, it can be illegal. So long as an accommodation does not pose a safety threat, unreasonably alter a curriculum or existing program methodology, or cause undue financial or administrative hardship – it is considered reasonable and thereby must be met.1,2 Yet, even if a request aligns with these stipulations, many educational institutions try to skirt the law to do what is in their best interest, rather than what is in the best interest of the disabled student.

This is something I’ve faced since, quite literally, my first day of kindergarten. The elementary school I was meant to attend had two floors and no elevator. Instead of adapting the environment, my district made the executive decision that I would have to go to one of the only two elementary schools in my town with one floor, despite the fact that it wasn’t the closest school to my home. I suppose the logic behind this was: why comply with the environmental and educational requirements of the Americans with Disabilities Act when there’s a cheaper way out, even though it’s unfair to the student and her family?

Structural inaccessibility such as this is just one of myriad problems that many educational institutions try to evade, usually by citing financial difficulties. While it’s true that elevator installation can cost tens of thousands of dollars, it’s an investment that will ensure a school is adhering to the law, making the building accessible for years to come. Moreover, though attending a different school in the same district may seem trivial, it was only the beginning of my district’s accessibility missteps.

From my first day of 6th grade until the day I graduated high school, elevators became the bane of my existence. Granted, both my middle school and high school had an elevator, which is certainly better than not having one at all, but the multilevel buildings proved problematic. For instance, the contingency plan in case a fire occurred while I was upstairs was for me to wait by the window to be rescued. “Don’t worry,” one of my teachers told me, “the classroom doors supposedly have a three-hour burn time.”

Worse, when I started high school, the only elevator in the building was the first elevator ever installed there, and it definitely qualified as an antique. Using it was so treacherous that my principal, whose mission in life was to get students off their cell phones, actually told my parents it would be a good idea to buy me one so I could call for help in case I got trapped. While I know it was suggested out of concern, this is perhaps one of the biggest problems encountered within public school systems by students with disabilities and their families: the onus is put on us to find ways to rectify or work around the issues. It becomes our burden, while the school comes up with excuses and attempts to wash their hands of any responsibility.

Of course, my parents and I were having none of that, and even though they bought me a cell phone (much to my delight), we suggested that the school accommodate me by scheduling all my classes on the main level. I’d call safety and the ability to access my classrooms reasonable accommodations – wouldn’t you? The administrators denied this request, and I never could figure out why. With the exception of science classrooms on the third floor that had special equipment, there’s really no reason my classes couldn’t have been moved. Thankfully, after quite a bit of persistence and advocacy from me and my family, a modern (albeit still faulty) elevator was finally installed about halfway through my sophomore year in high school.

Difficulty with the elevator was only one of the issues I faced. In addition to environmental access problems, my district seemed befuddled by how to ensure that I completed my physical education requirements so I could graduate. Some of my gym teachers tried rather unsuccessfully to be inclusive, but when this proved to be both futile and unsafe for me, the school had no clue how to institute an adaptive program, even though doing so was the requisite reasonable alternative. Again, this meant I was made to feel like an inconvenience, when in fact the school was really inconveniencing me.

At first, I was forced to come into school earlier than all my peers multiple times per week to meet one-on-one with a gym teacher. When he realized he didn’t have many activities to do with me, my parents took it upon themselves to attempt to solve the problem, purchasing a ping pong table from my synagogue’s thrift shop and donating it to my middle school. By high school, I no longer wanted to wake up early for a rousing round of ping pong, and so my gym teacher told me that instead of participating with the rest of my class, I could write research papers to get credit. Imposing extra homework on me in lieu of physical education because the school could not figure out how to adapt things for me was incredibly unfair. When I explained this, I was given the excuse that it was my only option because there was a lack of specially trained teachers to adapt gym classes for me. By this point, I had grown weary of excuses, of being made to feel like my disability was my fault. And so I worked with the physical education department to institute some semblance of an adapted gym program – one I hope they have continued and improved.

Elevator problems, gym class exclusion, and the countless other challenges I faced throughout my educational experience are indicative of issues that exist in public school systems throughout the United States. These are the kinds of issues that can and should be easily avoided. Schools must step up, maintaining an open, honest dialogue between administrators, teachers, parents, and most importantly, the students. Schools must follow through with their responsibilities as set forth by the law, because students with properly documented disabilities of any kind in mainstream educational environments are legally entitled to an educational experience just the same as their non-disabled peers. When it comes to following the law and providing reasonable accommodations to ensure access and inclusion, there are simply no excuses for making excuses.

Photo Credit: Alex/Flickr

Sources:

1) http://www.disabilityrightsca.org/pubs/530901.pdf

2) http://www.pepperdine.edu/disabilityservices/students/articles/whatisreason.htm

I Can Hear You: A Poem

I Can Hear You

Have you ever heard a teacher talk about what a student with special needs could or could not do? Have you heard a teacher call a student “low” while they were sitting right in front of them? This poem, from the Teaching Learners with Multiple Special Needs blog is pitch perfect.

I can hear you.
It seems like you don’t know that,
Do you?
I am sitting here,
In this chair.
Trying as hard as I can.
Or I was, at least.
Are you?
You ask me questions,
But you won’t wait for me to answer.
You talk so fast.
And you don’t check that I am ready.
When I’m quiet I’m good
When I’m noisy I’m bad
You boss me around,
Press this,
Touch that.
If I do or if I don’t,
It doesn’t matter.
You have already decided.
You have decided that I can’t.

Read the rest of the poem HERE.
Please visit Teaching Learners with Multiple Special Needs for more resources and ideas for teachers of learners with severe, profound, intensive, significant, complex or multiple special needs.

Communication is the Key to Inclusive Field Trips

fieldtrip

On days when school field trips were announced, I’d come home bubbling with enthusiasm and waving my permission slip around until my mother signed it.  Unfortunately, the recent news story about Holdan Crawley, the young boy who was excluded from going on a school field trip with his able-bodied peers, sent me into a stream of flashbacks about how often my bubble of field trip excitement would pop. As the only physically disabled student in my mainstream public school’s graduating class, field trips rarely went off without a hitch for me. Everything from blatant oversights regarding accessibility to transportation troubles made field trips a frustrating – and sometimes even embarrassing – affair.

While Holdan’s school district claims his exclusion was only due to a transportation mix-up, the problem and subsequent investigation has garnered a fair amount of national coverage. Of course, it would have been ideal if this hadn’t happened to Holdan at all, but since it did, I definitely think it’s important for such issues to be presented to the public. That being said, this kind of exclusion, accidental or not, continues to happen every single day to students who have disabilities. It’s obvious that there are important lessons to be learned from stories such as Holdan’s, but if my experiences and the experiences of tens of thousands of other students are any indication, I fear that the necessity of inclusion is all too often forgotten or completely ignored.

Based on some of my more memorable field trip snafus, I’ve devised some key points for teachers to keep in mind while planning field trips to ensure that all students are included. I should clarify that I absolutely understand that certain factors will be legitimately out of an educator’s hands, but in order to avoid as many issues as possible, there are simple ways to be prepared.

1) Maintain an open line of communication with parents or guardians of young students, and as the students get older, be sure to listen to them and encourage them to advocate for themselves. – When a field trip is in the planning stage, consult with your student and any involved family members. Teachers who kept me informed and asked me any pertinent questions were the ones who pulled off some of the best, most inclusive field trips.

2) Check, double-check, and triple-check that accessible transportation has been confirmed. – This is essential. It still saddens me to recall instances when I had to swallow my pride and have teachers carry me onto inaccessible buses in front of all my peers. Not only is this incredibly unsafe, but also the issue could have been totally avoided in the first place.

3) ALWAYS inquire about accessibility of the field trip location ahead of time. – Alice Wong, a friend of mine and a wonderful disability rights advocate, recounted a story to me about a French class field trip gone wrong: “I signed my permission slip and everything. The day before, the teacher tells me that the place is inaccessible and I can’t go. That’s it. She didn’t apologize or think about another accommodation or anything. It crushed me to find out that I couldn’t go with my friends and that my teacher cared so little about me.” This situation should be a cautionary tale to all educators. It’s the responsibility of the teacher to investigate accessibility. Doing so usually requires no more than simple phone calls, and will prevent getting a student’s hopes up about a trip only to realize they won’t be able to go. Even more importantly, this will guarantee that you don’t show up with your entire class on the day of a field trip only to be met with a giant environmental barrier. Remember, everything from staircases to construction sites to broken elevators can pose accessibility issues. Try to be thorough in your research.

4) Be careful not to presume full knowledge of what a student needs because of his/her disability. – In my opinion, this is the most important point. Since I’ve lived in my body for my whole life and I am able to effectively express my needs, I know what is best or easiest for me. After all, teachers only see students in a school environment, and circumstances may be different at a field trip location. So, while I understand that education professionals mean well, I cannot stress enough that assumptions must be avoided. Communicate with disabled students and their families, and respect any input they provide.

To illustrate why this point is so crucial, consider this field trip experience I had in 7th grade: The entire grade took an overnight field trip to the East End of Long Island, New York. Some of the school administrators decided without consulting me that my assigned chaperone should be the school nurse. They assumed that I had medical needs and decided that I required some kind of special care, which I didn’t. First of all, if a student does need medical care, this is likely something that a trained personal care assistant or family member should be handling. But in my case, having the school nurse as a chaperone wasn’t necessary. In fact, it only served to hold me back from participating in certain aspects of the trip because she treated me more like a patient than a student. Moreover, the nurse was elderly and wasn’t strong enough to assist in pushing my wheelchair over uneven ground, precluding me from keeping up with my friends. These awkward issues could have been avoided if the school administration had communicated with me to learn my needs and treated me as a student rather than a medical diagnosis on wheels.

5) If a field trip activity may be difficult but still possible for a student, be sure to communicate with the student about what they feel comfortable doing and how they would like to be assisted. – This is essentially the culmination of all my main points. Communicate, be it with parents and guardians, students, or both. Communicate, communicate, communicate!

6) Stay calm in unforeseen circumstances and be open to problem solving. – Even the most thorough preparation and communication won’t prevent unexpected predicaments. But with an inclusive mindset, teacher-student teamwork, and some creative thinking, you’ll be able to provide your whole class with a positive field trip and memories that can last a lifetime.

Photo Credit: Kevin Dooley

Do you have any tips to share with us? Tell us about them in the comments section below!

Who Should Speak For The Disability Community?

nothingaboutus

Who should speak for the disability community? Emily Ladau gives us some food for thought.

On any given day, the feeds of my social media accounts are brimming with resources, stories, and motivation about disabled people: parenting tips, educational advice, how to work with someone who has a disability, etc. About us, but too often not including us. There are countless communities geared towards supporting parents, family members, and professionals, sharing words of encouragement on how to be the best advocates for the disability community. And while I understand such support networks are usually well intentioned, in many cases, they take the power out of the hands of the people who know themselves and their needs best: people who are actually disabled.

Don’t get me wrong – allies, or what I refer to as advocate-allies, are incredibly important to advocacy efforts. “Ally” implies being supportive, while “advocate-ally” paints a more accurate picture of people who join in along with self-advocates. And true advocate-allies deserve the utmost respect. But a real advocate-ally is someone who doesn’t overshadow the voices and efforts of the people who experience being disabled every single day.

Of course, as a disabled child is just beginning life, parents and professionals have a responsibility to play a key role as advocates. Obviously, a four-year-old wouldn’t be able to discuss medical procedures or know what kind of environmental access modifications are needed, so we can hope that parents will make sound and informed decisions on their child’s behalf. But as disabled children grow older, if they can communicate effectively in any way, then the primary goal should be to embrace the child’s form of communication, working with them to develop their own voice for advocacy.

It can become problematic if parents or professionals are reluctant to relinquish their positions of authority and move to the role of advocate-allies, advocating alongside, instead of on behalf of, disabled people. Therefore, as important as it is to step up as advocates, it’s more important to know when to step down.

My feelings on this are rooted deeply in my experiences. As a passionate self-advocate, I owe so much of what I’ve learned to my parents. Even before my birth, my mom and dad were my number-one advocates, ensuring my well being and making decisions they felt were best. But as soon as I was old enough, I was routinely involved in all conversations and decision-making that directly affected my life. My parents continued to advocate not for me, but with me. Nothing about my disability was kept secret from me. While it was tough to face reality at times and I had to mature much faster than so many people my age, I can truly say I’m grateful for how my parents raised me. They remain supportive and are always there to advise me, but they laid a strong, solid foundation for me to uncover my own voice for advocacy.

Even so, I can imagine from a parent’s perspective that it can be incredibly difficult to turn off the instinct to speak for your child. When I was little and would try explaining something to my parents, I’d always declare “You’re not in my body. You don’t know how I feel.” And though I’m now in my 20’s and I learned some of my best advocacy skills from my mother (who also has a disability), she still sometimes starts to speak for me out of habit. We just laugh when this happens, because I know she just can’t help being my mom, but ultimately, both of my parents respect that I speak for myself.

Advocate-allies will be of the most benefit by modeling traits and attributes of a good advocate so that as children get older, they can become effective self-advocates. I’d love to see more families and professionals banding together not to speak for the disability community, but instead to encourage the young disability community to build up self-awareness and self-confidence. Doing so will contribute greatly to raising generations of empowered self-advocates who are in tune with their needs and their bodies.

Unfortunately, I don’t believe this kind of support occurs as much as it should. If so many people are all about advocating for inclusion, then why are people who actually have disabilities so frequently excluded from the equation? Though I haven’t crunched the numbers, it seems to me that the existence of platforms for advocate-allies far outweigh support systems needed for the empowerment of self-advocates. I believe this points to an urgent need for powerful advocacy communities to redirect their focuses on building up generations of self-advocates. In turn, this will encourage lawmakers, major organizations, and society at large to value and more seriously heed what self-advocates have to say.

So don’t count us out! A lifetime of support is essential, but only when self-advocates are given the chance to be the number-one advocates for ourselves can progress in the disability rights movement truly be made.

5 Things You Should Never Say to a Dad of a Child with a Disability

5 Things You Should Never Say to a Dad of a Child with a Disability

By Gary Dietz

A version of this article was originally published on the Dads of Disability blog. 

A strong shoutout to Mochadad Frederick J. Goodall for the article that inspired this response. If your child experiences a disability, just add my five to Frederick’s five. (There are a LOT more I assure you…)

When I am out with my son, we get all sorts of comments.  Just like Dads of typically developing children.  However, Dads of Disability get the extra sauce in this area of life as well.  Here are some of the things I get asked or told.

1. What’s his diagnosis?

Well, let’s see.  You are a complete stranger and you are asking about the medical, developmental, and behavioral details of my son’s life.  IN FRONT OF HIM?!  Let’s see.  How about none of your business?  I know you are just curious.  I am curious about why that lady over there is wearing really inappropriate clothes too, but I am not going to ASK her.

2. I know a kid like him

Really.  You know a kid “like” my son.  Through a single glance, you know the hopes, dreams, challenges, ups and downs of this very complex and unique individual known as Alexander.  And you know enough from that single glance to let me know that you know a kid “like him.”  And even if you did, so what?  You want a medal?

My favorite response to this question is “Like him?  You mean you know another boy?”

3. That’s OK, I understand

When my son attempts or actually makes inappropriate contact, you’ll say “That’s OK, I understand.”  Look, I know you are being nice.  And patient.  And I sincerely thank you for that.  However, it is *not* “OK.”  You should probably say, in as patient and understanding way, “You can say hello or shake hands, but I’m sure you know not to touch strangers.”  (I know, it’s a lot to ask you to learn.  But I have seen people react that way, so I know it is possible!) My son is a cute early teen now, but if you wouldn’t react that way when he is a 6′ late teen, you probably shouldn’t react that way now.

4. I wish I could be in that cart (wheelchair-like vehicle)

My son uses a Kid Cart when we go on longer walks or when he is really tired.  I can’t count the number of times that people of all ages, genders, and walks of life have said to me or my son “I wish I could be sitting there!”

Really?  You wish you needed an adaptive device to have mobility?

5. My grandson has autism too

First of all, how do you know my son has autism?  And even if he did, why do I need to know your grandson had autism too?  Look, I understand you are trying to make a connection with us.  Maybe even a special one.  If you do have “special” sensitivities to what you think you may be encountering with my son, just be authentic.  Say hello to him.  Ask him if he is enjoying the day.  Jeez, maybe approach him like you would approach ANYONE ELSE.

I’ve been tempted to respond “My Grandmother had gray hair too” or “My friend is black too” or “My mom has age spots too” but I haven’t done that.  It would be rude, wouldn’t it?

(Author’s note:  I’ve received feedback that the tone of this post is “snarky.”  I agree that the tone of this “list style” social media post could be construed this way, esp. by those who haven’t repeatedly experienced these kinds of comments from strangers.  Perhaps I could have included more straight “advice” in this piece.  Many other pieces I write, and my book, will not take this tone so much. Thx – Gary)

Dads (or Moms)! Has someone said something to you that made your skin crawl? We would love to hear about it. Leave a comment in the section below!

Photo Credit: Daniel*1977

About Gary Dietz

You can download sample essays and poems from Gary’s spring 2014 book Dads of Disability:  Stories For, By, and About Fathers of Children That Experience Disability (and the Women Who Love Them) at http://blog.dadsofdisability.com

Gary Dietz is a father of a 14 year old warm, funny, and challenging boy that happens to have a rare genetic disorder (a 13q deletion). He experiences a number of developmental, intellectual, physical, and behavioral challenges. Gary is an entrepreneur and educational technology marketing professional since 1997. He has a BA in Writing from the State University of New York (SUNY) at Potsdam.  Follow him on Twitter at @garymdietz and like his Facebook group at http://www.facebook.com/dadsofdisability

 

Pin It on Pinterest