Ableism comes in many forms

I am on a FaceBook group for siblings of folks with disabilities. Often folks ask for advice or support. Sometimes they commiserate about some hardship. Sometimes they complain or feel sorry for themselves.  Some revel in their experience, some wallow, some fight back.  And some attack.

One instance I recently encountered sent me reeling and I still have not fully landed. 

A member reposted an image form a different FaceBook group of a set of sibs with the following quote:

"I am a sibling of someone who has special needs. I believe this is the best thing that ever happened to me because now I see the world through the eyes of possibility."

In her repost she added the comment, "I know this is true for some sibs, definitely not for me. I love my brother but it's a life fraught with difficulties and pain. I sometimes think parents need to believe this positive spin to feel better. What do you think?"

I was rather shocked by the torrent of negative comments about the quote and the rallying behind the reposter. "I love my brother. He's a great guy. But he is most certainly not the best thing that ever happened to me. I doubt very many typical siblings even feel that way about their typical sibs. Please. The BEST thing??? He might have been the biggest thing in my personal growth. Maybe. But my husband and kids are the best thing that ever happened to me. And possibility? This is the best they could do??? Possibility of WHAT? right?! My possibilities are so limited as a result of so much responsibility at a young age and anticipated responsibility in the future."

Then the buzzword "toxic positivity" started flying

"Ugh. I think this is a great example of toxic positivity. It's kind of reductive for something that can be pretty complex. Sure, there are plenty of good effects of having a disabled sibling, but also lots of negatives. Not to mention all the burdens of expectation for future care that so many parents put on their typical children. It also begs the question, "possibility for who", because those pressures for future care seem to cut off possibilities for the future more than they create them, especially limiting possibilities for the life of the presumed caregiver."

"I have mixed feelings about this. Yes, I think as sibs we become more empathetic and we’re attuned with knowing people have different lives and backgrounds and family circumstances. HOWEVER, this definitely sounds like toxic positivity."

And so many presumptions.

"I love my brother so, so much. And I love that working in a field related to him and other adults like him has in some ways made me a more considerate person. But I’m not seeing what these possibilities are this post is referring to. Would I change my relationship with my brother? No. Like I said, I love him as he is and he’s the sweetest person I know. But the best thing? I don’t think so. This had to have been made by someone who isn’t one of us—an actual sib or family member who knows what our loves entail or has entailed. Or it’s a parent who thinks they know what their neurotypical child is thinking. Guess what—they have their own thoughts."

So I had to post a response: "I love my brother. We are great friends. We had a great childhood full of adventure. We hung out together through our 20s and 30s, and even lived together. We are still close though we live in different states. Having my brother is one of the best things to happen to me. His disability is not a factor in this, however. We just really like each other. Maybe I’m in the minority."

And the original poster replied to me: "Or your situation is just very different and that's great."

Exactly--maybe my situation--and MANY OTHERS including the original poster's--are very different. Maybe we are all very different as are our siblings and their experiences. It made me sad and a bit angry that a nice post about a sibling believing that having a sib with a disability was the best thing for THEM turned into something so negative. Several posters also said the post was "inspiration porn" a term coined by disability advocate Stella Young. Inspiration Porn is when folks without disabilities hold those with disabilities high up on a pedestal to be admired, to be an inspiration to the rest of us. The old "if the guy with a disability can do it, gosh darn it, so can you!" adage. But I have to disagree. I do not think that every time someone shows esteem for a person with a disability it is inspiration porn. I talk about my brother who has a disability a lot! I do not do it as inspiration but rather because I am proud of him and because I want to share his accomplishments. I do the same for my son and nephews and cousins and friends. It is not inspiration porn when I talk about their accomplishments, but suddenly because my brother has a disability it is seen in a negative light. It is viewed as using him and his disability to inspire others to keep trying. That is sad and misguided. I think the folks whose minds automatically go there are the problem, not those of us who are sharing the feats of our disabled comrades. This is ableism at its best.

Disability is not a subject for show and tell

    I can remember when I was teaching, “cultural diversity and sensitivity education” was popular for both the students and the staff. We had guest speakers, discussion groups, folks who volunteered to share stories about their heritage, and book studies from a diverse set of authors with a diverse set of topics. But one aspect of cultural diversity that was never included was disability. I brought this up to our leadership and they agreed that it should be included. I was pleased until the lessons regarding disability were presented. A common approach to disability education is the use of simulation activities. Presumably, the idea behind this practice is that allowing individuals without disabilities to “try on” various disabilities, will help them develop empathy for people with disabilities, but the practice of using simulations to learn about disability is flawed and harmful.

    Some of the common “lessons” using simulation include people without disabilities wearing a blindfold, using a wheelchair, or wearing noise-canceling headphones in an attempt to feel what it is like to have a disability.  Engaging in these types of simulation activities creates a flawed and very limited perception of disability. If a person engages in an activity wearing a blindfold, supposedly to simulate blindness, they might think the activity is sort of fun or silly, leaving them with the perception that it’s fun to be blind. The opposite could also occur where they may leave the activity thinking, “Thank goodness I’m not blind.” This perpetuates the narrative that disability is tragic. Probably they will also walk away from such an activity believing that people with disabilities need help and pity to make their lives easier or better. 

    Additionally, in these simulations, when folks use a communication device or a wheelchair for a short period and then have the option to yell or run on the playground, it does not help students understand how to be supportive of people with speech-related or physical disabilities, nor does it help students understand how people who use assistive tools and supports feel about their disability. Even being as close as I am to my brother, Dave, I have no idea how he truly feels about having a disability.  He can tell me, but I cannot KNOW, much like I can never KNOW how my son feels about being a black male.  We can discuss it and I can understand academically, but I cannot feel what he feels. Simulations are intended to help with empathy and understanding.  I think they can be patronizing and further marginalizing for individuals with disabilities. As a side note, when we did this exercise at the school where I taught, my students, all of whom had various disabilities themselves, were expected to participate in an effort to be inclusive.  This was the epitome of that good old road to hell that is paved with good intentions.  I will leave it up to you to imagine how that turned out. 

  Another practice that is commonly employed in disability education is using individuals with disabilities like show-and-tell, asking them to share with their classmates, colleagues, church fellows, or teammates about their disability as a means to help people without disabilities to feel more comfortable and be more understanding of the one with a disability. When my son was in second grade, he came home excited to tell me about the girl in his class whose show-and-tell that day was the best ever.  In his words, her show-and-tell was a “fake leg.” I was at first horrified, then perplexed, then angry, as the story progressed. Apparently, a new student had started in his class earlier that week who happened to have a prosthetic leg. Her mother came to their class and told her daughter to remove and then reattach her prosthesis for the class. While this was going on, her mom informed the class that her daughter had been in a car accident as a baby that killed her parents and caused her to lose her leg.  Her Mom and Dad then adopted her. I have to believe her actions were with the best of intentions and meant to educate the class and remove any stigma from her daughter, but my son certainly missed that point completely. He thought it was amazing that she could take off her leg, but he did not identify her as a child with a disability.  She was just a classmate. He had already befriended this young lady before the class presentation and thought nothing of her prosthesis. Having been around his Uncle Dave for his entire life and being a black child with Chinese stepsisters and a white mom, my son was accustomed to diversity. The show-and-tell lesson was fun for him, but it may have backfired for others. They may not have paid her prosthetic any mind had it not been put on display.  By singling her out as different, some other children may see that difference as bad or negative.

    Once again, the construct of exposure rears its head. If people with disabilities had greater access to more opportunities, environments, activities, and settings, we would not need to engage in sensitivity training. By doing these types of trainings, we are attempting to justify their inclusion. We are saying, “See, they are just like us, only they are/have [fill in the disability].” This is very marginalizing. It reinforces that there is a “normal” and that people with disabilities are not “normal.” We need to teach children with disabilities about their disability and how to respond when people ask questions, and we need to teach the rest of the group how to respectfully ask questions of others when they are confused or curious. 

 

To call or not to call

I have a friend who has a daughter with CP and ID and a son with Autism. He is divorced and does not see his kids very often because they live half way across the country. He was separated from his kids when they were 8 or 9 years old.  He has a couple other kids without disabilities as well.

He has planned week or two visits to his kids twice a year since the divorce.  The kids are all grown now, in their 20's and he has stayed connected to all the kids all this time through phone calls, texts etc., but it has been harder to stay connected with the 2 with disabilities because he has to depend on his ex to make that connection work. He sometimes feels that the kids are not super interested in his calls because his ex is always involved. He does not really get to have a conversation with them but rather it is like having a conversation with the ex as she relays what she thinks he wants to hear.  When he sees the kids they seem happy to see him but they are also anxious for him to leave so they can get back to their routines. He wonders if his kids would be better off if he just stopped calling and visiting. 

This was difficult to hear and to consider.  I could not imagine not texting regularly with my son and talking on the phone once a week but my situation is so different from his.  My son is in control of himself and his decisions.  He does not need to have a go-between to communicate with me. I know my conversations with my son are genuine and truly with him.  My friend, on the other hand, does not.  He does not really know if his kids are truly happy to hear from him.  He cannot be sure if they would miss his calls or not. He says he feels guilty for not calling more often but also guilty for calling and disrupting their routine. I cannot imagine what that must be like.  To want to do what is best for your children but not really having a real honest way of knowing what that may be. 

I can understand his desire to stop calling them but at the same time I cannot.  He has never thought about not calling or texting his kids without disabilities so why is it even a consideration to not call or text those with disabilities? I think it really comes down to the level of independence and control his kids have over their life decisions.  I know that his daughter (we will call her Grace) has very little control over her life. Decisions are made for her and even when she is given choices they are very limited.  She has the ability to make choices from a wider array but is not often given the opportunity to do so.  There is some degree of learned helplessness and codependence between her and her mother, her primary care giver.  Grace's mother has never offered to set up the phone for her and leave her alone for the call. Grace can communicate verbally so she CAN interact on a call. She has also never initiated a call between Grace and her dad. At one point she even asked my friend if he would consider giving up custody of Grace so her mom's new husband could file for custody. This did not happen by the way. 

This situation reinforces for me the importance of individuals with disabilities being taught early on how to advocate for themselves, how to be self determined and how to make supported decisions.  When children with disabilities are not given choices or any degree of control of their own lives, they can easily become passive and allow others to make all their decisions for them and often to do everything for them--or actually do everything to them. This is learned helplessness.  The more someone else makes their decisions and does things for them, the less self determined and independent they become, allowing others to have all the control. This becomes the way things are, the norm, the expectation. 

This also takes away quality of life and ownership of life from the individual with a disability.  I think of the expression, "you don't know what you don't know." If you never know how to make your own decisions or care for yourself to any extent, you will never know the joy of it. if you never know the joy of it, you cannot miss it. If all you ever know is being passive and allowing others to do and choose for you, you cannot know how empowering it is to make your choices, to choose your own pathway, to accomplish something independently, or to know your own potential outcomes. You cannot know what it is like to make a bad choice and thus, the fulfillment of setting it right, and learning from that mistake. 

I really do not think most caregivers are out to reduce the quality of life of their charges (though certainly some may). It can be quite overwhelming and exhausting to care for someone with disabilities. It is even more of a challenge when the caregiver is attempting to afford the individual with a disability the chance to accomplish tasks on their own.  They may need support and instruction and prompting. This takes time and energy. It is not uncommon to think it would just be easier and quicker to do things for them rather than taking the time and energy to support them to complete the tasks on their own thus aiding them in being more self determined in the future. It is critical to begin teaching individuals with disabilities how to make choices, how to advocate, how to complete daily living tasks, how to ask for and refuse things. We can never really know for sure what the best options are for individuals with disabilities unless we help them to be able to have a voice for themselves. If Grace had been taught this early on, maybe my friend would have a better handle on her wants and needs and he could have more easily and less painfully made a decision about whether to call or not to call.

Students with disabilities: the minority group that we separate and get away with. Why is that?

Least Restrictive Environment, according to IDEA, means that "each public agency must ensure that (i) to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are non-disabled; and (ii) special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily." Each state is held accountable and monitored through Special Education Profile data regarding LRE practices. The expectation is that most students with disabilities will spend at least 80% of their school day in educational settings with their same age and grade level peers without disabilities. 

Consider this information alongside the fact that about 80% of students with disabilities do not have a cognitive disability and only about 1% of students with disabilities have a highly significant cognitive disability. Seems to me it should be pretty easy to be able to educate most students with disabilities in general education classrooms alongside their peers without disabilities, using the same high quality instructional methods and materials. 

On average, across the country, state targets for Special Education Profile Indicator 5a for LRE (students with disabilities spending 80% or more of their day with peers without disabilities) range from 50% to 80%, meaning that the goal is to have 50-80% of students with disabilities spending 80% or more of their day with their peers without disabilities. Most state targets are around 60% and most states are hovering right around their targets. Each state is allowed to set their own targets as long as they are above baseline and show growth over time. When districts do not meet targets, they are informed and are expected to take action to rectify the issue. 

Again if 80% of students with disabilities do not have cognitive disabilities, they should be able to access and make progress in the general curriculum. They should be spending the majority of their day in the general education setting, and targets should be far higher than 60%. Seems to me targets should be, AT A MINIMUM 80%. But unfortunately, much like every other minority demographic, decisions are made for students with disabilities by those without disabilities, those in the majority--those in the privileged norm group. 

When students with disabilities are given access to an educational setting that includes peers without disabilities, it is often seen as the student with a disability being allowed to be in that class, to have that access.  It is the prerogative of someone else to  grant that access through the lens of privilege as though some students need to earn the privilege of access to general education, to high quality instruction from content experts, using high quality instructional materials and methods.  And it is almost always conditional as well.  They can access this class if...they behave, they make progress, they do not take time and attention away from the others. Education is supposed to be for ALL learners, not most, but ALL. And ALL learners have the right to access the same educational environment. 

When we decide to educate all types of learners together in the same setting, all the students will benefit. We often think that the kids with different or complex educational needs will take something away from those children who are progressing as expected or who are accelerated. It can be viewed as unfair or putting the students without disabilities at a disadvantage but in reality, there is either no difference in outcomes or children with and without disabilities benefit.  In a  meta-analysis of inclusive education research by Kalambouka, Farrell, and Dyson’s in 2007, it was found that 81% of the reported outcomes showed including students with disabilities resulted in either positive or neutral effects for students without disabilities. Other studies indicate that the outcomes are almost always positive for students with disabilities. Students without disabilities made significantly greater progress in reading and math when served in inclusive settings. (Cole, Waldron, & Majd, 2004; Cosier, Causton-Theoharis, & Theoharis, 2013; Dessemontet, Bless, & Morin, 2012)) 

LRE is based in principles of equity. Equity does not mean that all kids get the same thing. Neither does it say that all kids will reach the same outcome.  What is does say is that all kids will be given access to the same quality instruction, educators, materials, resources and environments AND whatever additional supports and services they might need to fully have that access--access to the general education curriculum. Yes, least restrictive can mean different things for different individuals but I would argue that the restrictiveness of an environment can be manipulated if barriers are identified and solutions are found by collaborative teams.  Any environment can be made less restrictive. It may take time and effort and energy and innovation and ingenuity but it can be done. 

Including the Whole Family When Planning for Individuals with Disabilities

Parents are essential members of planning teams for individuals with disabilities.  In fact, federal law, the Individuals with Disabilities Education Act (IDEA) mandates parent participation when planning for children with disabilities in school settings. Schools must ensure that parents are invited to all planning meetings and that these meetings are arranged at a mutually agreed upon time and place to increase the probability that they will be able to attend.  If parents cannot attend, the schools must be sure to seek their input and keep them informed of all decisions and changes to their child’s programming. Schools are required to involve parents but as a sibling to my brother with a disability, I also think it is important to include other family members as well, whenever possible.

Parents may not realize that they can invite anyone they choose to planning meetings, including their other children.  I often attended my brother, Dave’s, Individualized Education Plan (IEP) meetings.  Siblings can often offer a different perspective and additional information when creating educational plans for their brothers and sisters.  The majority of siblings often spend more time with one another than with anyone else. Across the lifespan, siblings influence each other in many ways that people are often not aware of.  They can be the most foundational element of a child’s social life. While siblings can be a source of annoyance to one another, they are also each other’s first playmate, observer, teacher, and supporter.  They serve as practice partners with social interactions and as emotional and behavioral models as well. 

    Sibling relationships are often the longest-lasting and strongest relationships in a person’s life. Siblings know each other very well and possibly in a different light than either parents or educators. While parents may be more protective and sometimes enabling of their child with a disability, siblings can be tougher and push them toward being more independent.  Dave has quadriplegic cerebral palsy, uses a wheelchair for mobility and an Augmentative and Alternative Communication device (AAC) for communication.  He has some limitations due to his disability including needing support with all daily living tasks.  Growing up, our parents often believed that Dave would not be capable of completing many of these tasks.  They asked me to assist him before he was even given the chance to try.  I always encouraged him to try things before I stepped in to help him.  Sometimes he struggled and became frustrated but more often than not, he would be able to complete the tasks I put to him, sometimes with support and sometimes not. At various planning meetings for Dave, I was able to share these types of experiences with the team, offering a different perspective than that of our parents.  

    Once individuals with disabilities move on from school and into adult life, the protections of IDEA are no longer available.  There are some protections under the Americans with Disabilities Act (ADA) Section 504, but parents are no longer a mandated part of any planning teams.  Whenever possible individuals with disabilities need to be able to advocate and make decisions for themselves. They may need supported decision-making partners and in fewer instances, guardians or powers of attorney (POA).  When there are siblings, families often turn to them to fill these roles. Parents will often have conversations about life in the future for their child with a disability and quite frequently, siblings are an important part of the discussion.  Because siblings are the longest-lasting and strongest relationships in a person’s life, it makes sense.  They will likely be a part of the individual with a disability’s life longer than their parents. 

    Even if siblings do not take on the role of supported decision-making partner, guardian, or POA, they should be included in planning meetings for and with their sibling with a disability. My brother is now a grown man, married and living with his wife in another state but I am still involved in his life.  Fortunately, he is able to make his own decisions, but he will still call me on occasion when he needs to talk through something.  Parents should encourage their children to take an active role in their sibling with a disability’s life.  Not all siblings are comfortable with or understand their brother’s or sister’s disability or what their needs might be.  This can often occur because parents do not want to burden their children without disabilities or make them feel they need to take on any carer responsibilities.  If parents do not explain to their other children about their sibling’s disability it can lead to those children feeling ignored because their parents are paying more attention to their sibling with a disability, but they do not understand why.  With open communication and honesty, this dynamic can shift to one of understanding and acceptance as awareness of the disability increases, and their attitude and disposition can change to one of empathy and care.

    In our family, we all pitched in to help with Dave when needed and we included him in everything we did.  Decisions were made as a family. Our parents never wanted us to feel that we were required to help care for Dave.  They wanted us to be friends with him, to play with him, to include him, to occasionally babysit, but not to be fully responsible for his day-to-day care, though we did participate in some caregiving. This fostered a good relationship between us all. Many siblings experience feelings of guilt and self-blame because either they do not feel that they are not doing enough to care for their sibling or because they are achieving at higher levels and in more arenas than their sibling. They may isolate and keep their feelings to themselves, not believing anyone will really understand. Much of these feelings stem from siblings not wanting to make a challenging situation even more challenging for anyone in the family.

    Often young siblings do not realize that these feelings may stem from having a sibling with a disability.  They may think that everyone feels this way and that they do not need support but as they age, and look back, they often think it would have been good to have someone to talk to about it early on. Parents should talk to their children about their sibling and their disability and what it may mean for the family.  Also, seeking out others with children with disabilities can be helpful for siblings.  Siblings can feel isolated because they have no real network of other siblings with a shared or similar experience. Meeting peers who also have siblings with disabilities can provide much-needed support and community.  Many siblings think it would be great to meet other siblings so as not to feel so alone, and to know there are other siblings out there, with a shared life experience. Siblings can feel alone because most other families they know and encounter do not have an individual with a disability in their mix so they may think they have no one with whom to share their feelings. 

    Social support networks like SibNet (https://www.facebook.com/groups/SibNet/) or the Sibling Leadership Network (https://siblingleadership.org/) can prove to be central in helping siblings understand their own needs and to have their experiences validated.  All too often, siblings keep their feelings inside because they do not want to cause stress or do not think others can relate. They may also be concerned about how their actions might impact the family or their sibling with a disability.  By talking to others with a shared experience, siblings can begin to understand that their feelings are not a direct result of their sibling’s disability but rather due to the lack of support and understanding from others.

    When a child with a disability becomes a member of a family, it is important to talk about it with everyone and to involve their siblings in planning for them. Siblings can offer an alternative perspective about life with a sibling with a disability and can provide valuable insight and information that parents may not be privy to. Also, this helps the siblings to understand their brother’s or sister’s needs and to know that, even if they require a bit more time and attention from the parents, it does not mean that the siblings without disabilities are less important or less deserving of time, attention, and love.

Convenience vs Consideration

I went to an event with my dad at his church yesterday. A couple of things happened that made me a bit uncomfortable. I was actually quite angry but I had to check myself because I wondered if I was being too sensitive, too easily offended or if my reactions were unwarranted.

My dad, who lives with me, is 85 and not too steady on his feet due to his severe rheumatoid and osteo arthritis.  He uses a cane around the house and a walker when out. He also has trouble walking any distance.  He gets winded pretty quickly and has COPD and reduced lung capacity so he needs to park close, take frequent breaks when walking, use a wheelchair (his least favorite), or be dropped off at the door.  He is considered to have a disability. 

So back to the event. It was a cook out hosted by a church group that dad is a part of and it was held in an outdoor pavilion.  The parking is not super convenient so when we go to events at this venue, I drop him off at the walkway to the pavilion.  It is pretty flat and level and only about 10 yards. This time, however, the president of the organization had parked his very large pick up truck, complete with an attached trailer, across the walkway, completely blocking it.  I found this to be incredibly selfish and thoughtless.  I had to drop dad off at another walkway that was less level and probably 50 yards from the venue. When we got inside and dad found this man, he asked to have his truck moved before we planned to leave. He said he would and wandered away to mingle and schmooze. Fast forward. He did not move the truck.

A bit later, another member of the event team was passing out ice cream for dessert by going up and down the already narrow aisles with a large cart. When he approached the area in which we were sitting, he picked up my dad's walker with one had, held it over his head, and maneuvered the ice cream cart forward with the other.  Once past, he all but dropped the walker with a clatter, almost hitting at least two people in the head with it, then moved on with his cart.

These things really irritated me.  The truck parked across the path was bad enough, but the fact that, even when told it was blocking the way and made it impossible for anyone with a disability to use it, this man was unconcerned and failed to by an ally and move his truck.  I am quite certain that he parked there for his own convenience.  It is the closest path to the pavilion and he was likely unloading things to carry to the event. But once he had done this, he should have moved his truck. It likely never crossed his mind that by blocking the path he was marginalizing certain people. He was not impacted so it was not even on his radar. 

This is all too typical unfortunately. I see this all the time with many marginalized groups.  This idea that you only need to be sensitive or concerned sometimes. If they are watching or part of your group, if you think they are in need of an accommodation, if it makes sense to you. If people with disabilities tell you they need something, odds, they need it! Now, I am sure there are people with disabilities who take advantage of things periodically, but the vast majority do not.  They do not want special treatment, or to make others feel uncomfortable or badly, or to put anyone out.  They just want equitable access and treatment. 

As for the person who man-handled dad's walker, for him, the walker was just an object in his way.  He saw no reason to treat it differently than any other thing in his way.  But, I am sure he would have reacted differently if someone's foot or child was in the way of his cart.  He would have asked the owner of the foot or the carer of the child to please move them so he could get by.  Specialized equipment is an extension of a person with a disability, much like a foot, and should be treated with as much care.  Grabbing his walker, swinging it overhead and plopping it down aggressively was not appropriate. Dad should have been asked if the walker was his, and then could he move it please so the cart could get past. 

Again this happens all too frequently as well.  People will often move equipment out of their way and then not even return it to its original location.  Without a walker, most users are pretty immobile.  They need this equipment. If it is moved away from them, they are left hobbled. Even worse is when wheelchair users have to relinquish control of their chairs to board a plane and then hope and pray that it comes back in one piece.  Airlines are notorious for damaging expensive power wheelchairs when they are placed under planes in the cargo hold.  Another common occurrence with wheelchairs is either grabbing onto them to guide the user, or actually moving the chair with the person in it, often to a location that is less than desirable, out of the way, under the guise of keeping the user "safe". But what it is usually about is keeping them out of the way of the rest of the crowd. 

I recently read a post by Emily Ladau on her FB Page, Words to Wheel By, that reminded me of this. Here is are some excerpts that exemplify my point:

"[While dining with friends at a restaurant, another diner] had tripped over [her] wheelchair and was determined to let everyone know that the space [she] took up was a problem. 'She's dangerous. She's dangerous.'

[She] felt awful that [the woman] had tripped, but [Emily] is not an object or a threat. [She] turned around and said, 'Ma'am, I'm not a danger. I'm a human being.'

A few weeks later...after [an] event, there was a reception, where [she] arrived only to discover the area where everyone gathered was down a giant step. So, instead of being able to join the group, [she] was offered an isolated spot in a corner where [she] could see people chatting and laughing through a window...kept out of the way. As though that corner was the only place [she] belonged."

People with disabilities are entitled to and deserve equitable access EVERYWHERE all the time, not just when it is convenient or easier for others. They deserve to be treated with respect, including treating their equipment with respect. They should not be expected to have to access a public space through an inequitable entrance, one that is inconvenient, around the back or less than accessible. And they should not have their equipment manhandled and disrespected.  We have finally done away with "whites only" drinking fountains, so why can't we do away with "able-bodied only" venues?

Keep Expectations High and They Will Rise to the Occasion.

Recently I was at a conference, at which a colleague and work partner and I were presenting a session about increasing graduation outcomes for students with disabilities. I was sharing some of our rather dismal and somewhat alarming data as a nation, state, and region regarding graduation and drop out rates for students with disabilities. As a state we have a history of not doing well by our students with disabilities regarding achievement, inclusion in the general education setting with their peers without disabilities (LRE), discipline, and graduation. One attendee in the audience politely asked if we had some ideas as to why our state was not doing well specific to graduation rates.  I responded by mentioning that while the federal legislation outline expectations for states, each state has been able to set their own targets and some aimed high while others were more conservative. While the low targets may look a bit better in the short term, they will not catch up in the long term. 

I went on to state that also as a society we have lowered expectations when it comes to outcomes for students with disabilities. At this statement, another person took offense. He became quite defensive saying that my comment was wrong and offensive. I presented further data from several years ago that showed that of students with disabilities who were excused from the consequences of high stakes testing by their IEP team PRIOR to ever attempting the assessment, after taking the test, over 20 percent of them actually passed the test. This exemplifies lowered expectations.  It was assumed by these IEP teams that the students with disabilities would likely not pass the test so they were excused from having to pass it based on assumptions. Twenty percent of these same of students with disabilities, in fact, passed the test, despite the assumptions made about them by their teams. Our naysayer went on to comment that he deemed it unfair and unjustified for people like us, people he viewed as in "power", to assume that people like him "in the trenches" with kids are not working hard to help students with disabilities. 

When people get defensive in response to someone saying something they find controversial, often that individual feels the need to protect themselves, their beliefs, or their opinions from what they perceive as an attack or criticism. Being defensive can manifest in various ways, such as outright denying the validity of the controversial statement or dismissing it without considering its merits; counterattacking by responding aggressively or attacking the person who made the statement rather than addressing the content of the statement itself; or rationalization in which they attempt to justify their own beliefs or actions in the face of the controversial statement. They may also deflect or distract by attempting to change the subject and in some cases, individuals may withdraw from the conversation or avoid engaging in discussions that challenge their views. In our case, the defensive individual chose to deny, counterattack and rationalize.  

I believe that most people who work with students with disabilities have the absolute best of intentions.  I do not think most folks are out to do harm to anyone. But as they say, the road to hell is paved with good intentions. This proverb warns about the potential negative consequences that can arise from actions or decisions that were well-intentioned but ended up causing harm or leading to undesirable outcomes. In essence, it suggests that even when people have the best of intentions and believe they are doing the right thing, their actions may still result in unintended negative consequences. This is often true in special education programming for students with disabilities. 

We often see separate programs for students with disabilities or other learning differences. These programs are designed not to harm children. The are designed with the intent to better serve them.  People often think it is best to group children with special learning needs together in a separate setting so they can be provided with more intensive and highly specialized programming.  But what this really does is exclude them from the same high quality and rigorous instruction that their peers without disability are accessing. Additionally, changing expectations or outcomes for students with disabilities as compared to their peers without disabilities may help students with disabilities to enjoy a higher rate of success but what this really does is shelter them from hard work and high expectations, and yes, even failure.  This sheltering is not doing them a service.  It is actually a disservice.  The world is full of amazing things, happiness, and successes, but it is also full of disappointment, loss and failure.  We all need to learn how to handle and manage and learn from disappointment, loss, and failure.  We cannot learn form it if we never experience it.  We need to support and coach children when they are unable to accomplish something...yet. But not allowing them to try because we do not want them to feel bad is not the way to go.

Passing students along from grade to grade, subject to subject, task to task, when they have not attempted the same rigorous work or have not been held to the same standards as their peers without disabilities is lowering expectations.  Assuming that students with disabilities cannot do the same things as their peers without disabilities prior to even giving them a chance is lowering expectations. Often lowered expectations are masked with good intentions. By removing kids from the general education setting without offering them a chance there first, with supports, is lowering expectations.  

Most of the time, students with disabilities are removed and excluded from the general education setting with the good intentions of it being in their best interest, or to keep them happy and safe and free from bullying. While this may be true to some extent, there will be unintended consequences.  Once children leave school, they will not be as protected as the well intentioned folks at school have tried to arrange.  Their is no segregated movie theater, there are no competitive self contained special ed jobs. Students with disabilities will one day leave the shelter of school to become members of the larger society where they will have to interact with people without disabilities.  They may encounter bullying and impatient people. They may no longer be as safe.  By not teaching students with disabilities how to handle these situations, we are lowering expectations.  We are assuming they will not be able to handle or understand it or that will always need, and always have, someone to intervene on their behalf.  

In the guise of helping, we are actually hindering students with disabilities when we do not hold them to the same high expectations we have for students without disabilities.  Now I am not saying that all students with or without disabilities will reach the same outcome on the same pathway at the same pace and at the same time.  All students will need various supports along the way, and some will need more time as well.  And some will not make it, but that does not mean we should not always TRY to get them to the same outcome. Keep that same outcome in mind as the finish line for all students and then do your best to get them there or as close as possible.  Provide them with supports and services to help them attain this outcome.  That is how we can best support all learners and how we can increase our expectations and outcomes for our students with disabilities.