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. 

We Need To Do Better

I recently read a little story on Facebook about a man named Tim who was at Boston Logan Airport with his sister, whom he had been visiting. Apparently, Tim was deaf and blind. When he was guided onto the plane by his sister, they discovered he was assigned to the middle seat and the kind gentleman in the aisle seat gladly switched with Tim. The story went on to describe all the other wonderful things that happened for Tim during his flight like his seat mate guiding him to the restroom and opening his coffee cream container, and the flight attendants rallying to find a way to communicate with him, including allowing him to touch their faces and hands and arms and even considering sending a page to the entire plane to see if anyone knew sign language. But then a teenage girl appeared who was dyslexic and learned ASL because it was the easiest foreign language to learn, and she parked next to Tim and talked to him the whole flight and met all his needs. “It was fascinating to watch as she signed one letter at a time into his hand. He was able to 'read' her signing and they carried on an animated conversation. When he asked her if she was pretty, she blushed and laughed as the seat mate, who had learned a few signs, communicated an enthusiastic yes to Tim. I don't know when I've ever seen so many people rally to take care of another human being” (Humanity Project Facebook page 2020. This is not the original posting of this story. It has been shared many times so it is very difficult to determine the actual origin).

It’s good to hear a nice story like this but believe me this is not the norm. My brother, Dave, who has quadriplegic cerebral palsy, uses a wheelchair, is nonverbal but uses a communication device, and is of above average intelligence (think Steven Hawking), was flying back to his home (and wife) in Austin, Texas from Cleveland Hopkins airport on American Airlines. A friend and I got him on the plane and settled in his seat. He would not need anything during the flight and had a friend meeting him at the end of the flight to help him disembark. Well one flight attendant pitched a holy fit when she observed my brother and his need for help to board the plane. She started ranting about how he could not fly unattended. It was not her responsibility to aid him should he need anything. In the event of a forced landing, it was not her responsibility to help him off the plane. I told her then don’t. Leave him. I said I was sure some other kinder person would come along to help him—or not, but it was certainly not her responsibility. She stopped the boarding process and conferred with the crew saying they needed to remove my brother from the flight. I pushed back of course. In the end the captain said he could fly and assigned the flight attendant to a different section of the plane. No one rallied around Dave, or even paid him a bit of attention during his flight. 

I’m glad to hear about Tim’s nice story. But for every nice one there’s a not-so-nice one, like Dave’s. It is probably more like for every one nice there are ten not-so-nice! And even the good ones are a little cringy and most are “inspiration porn” (a reference from Stella Young—we will talk about her in a bit).  For example, in Tim’s story, if they could not communicate with him, how did they know he wanted coffee with cream and how did they know he wanted help with his cream container? They let him touch their faces, arms and hands? He got away with asking if a teenager (she was 15 years old) if she was pretty? If Tim had not had any disabilities none of that would have been appropriate.  I even question if it is appropriate for Tim with disabilities. And then the idea of announcing to the entire plane that they have a deaf-blind passenger on board and is there anyone here who knows ASL? Maybe Tim wants to fly under the radar on this flight. Maybe he wants to nap and not talk to anyone. No one took Tim into consideration when thinking about Tim’s needs. 

 

This story highlights how wonderful it is that the non-disabled people around Tim, rallied to help him and went out of their way and above and beyond to make him feel welcomed. But what really happened was a bunch of people singling out Tim and shining a spotlight on him as a display of their altruism.  Most people with disabilities do not want to be put on a pedestal or to be used as a pawn in feel good stories. They just want to be. They want to be a part of the crowd not the focus of the crowd.

Stella Young, as mentioned earlier, put it so well. Our society has been conditioned to think about people with disabilities as exceptional but not because the do great things but because they can engage in some typical, run of the mill daily things while having a disability. So when we see someone with a disability we tend to think about how hard life must be for them and when we see them “overcome” their challenges we are inspired. Think about the images we have all seen of the runner with a carbon fiber prosthetic leg or the artist with no arms painting with a brush in their mouth or with their feet, with a slogan attached like “the only true disability is a bad attitude” or “try before you quit”. These are designed to INSPIRE! If they can do it, so can I! And they also make you think no matter what barriers I have, at least I am not that person. This is inspiration porn. Stella said, in a TED Talk about why she uses the term inspiration PORN, is “because they objectify one group of people for the benefit of another group of people. So, in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person’. I've lost count of the number of times that I've been approached by strangers wanting to tell me that they think I'm brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. And it is objectifying. Those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren't so bad for you, to put your worries into perspective.”

The story about Tim, to me, is inspiration porn. Yes, it was nice that folks helped Tim. But if he had not had a disability the story would have been very different, from the help he would have received to the bystanders’ reactions. But because Tim had a disability, he was seen as “less than” as needy. We were inspired by his courage to travel alone and his tenacity to communicate but no one gets all excited when I travel alone or communicate with people. Also, if someone opens my coffee cream or points me in the direction of the bathroom on a plane, no one writes a little story about how great it was that so many people rallied to support me. People with disabilities do not want to be treated special. They do not want to be your inspiration.

On the flip side, people with disabilities do not want to be considered your burden or responsibility either. They just want to be. They want to be included and accepted and to belong. They do not want special treatment, just equitable treatment and access. As much as people rallied around Tim, they fled from Dave. The flight attendants did not convene to discuss how they could help Dave feel comfortable on his flight. No one jumped to his defense except me and his friend, and thankfully the pilot of the plane! But no one really had to. They just had to let him be. They just had to accept that Dave is just another passenger on another plane. He is not special or exceptional. He is just a guy that uses a wheelchair and a communication device. We need to stop looking at people with disabilities as less than. We tend to see people who may look or act differently than what we currently except as somehow wrong. But that is because we have not been around people with disabilities. They have been isolated and removed and treated differently from the start. We have been taught there is a preferred or typical or normal way to act, communicate, move, engage. This is so wrong. It perpetuates the belief that people with disabilities are exceptional, different, alien. We need to step out of the box that was created by able bodied white men centuries ago about what “normal” is. Just like Stella Young said, “I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people.” We need to do better. 

Is the person disabled or is the environment?

It is important to recognize and honor diversity as it brings a lot of interesting stuff to the table.  But diversity should not be used as a comparison to some contrived norm made up by those with power and privilege.

When we think about attributes of any race we, as a society, have been taught to compare any race to white or Caucasian. We use white attributes as the norm.  While there are currently more white people in the US than any other individual race, that does not automatically make it the "standard" by which to compare all other races nor does it make it the most desirable.  The same can be said for any other demographic category that is in the majority like non-disabled people. 

Our society sets standards according to the normed, majority group and expects all others to fit in. We have seen throughout our history. This is the  idea of assimilation, the process whereby individuals or groups of differing ethnic heritage are absorbed into the dominant culture of a society....the process in which a minority group or culture comes to resemble a society's majority group or assimilate the values, behaviors, and beliefs of another group whether fully or partially. This is the "Great Melting Pot" idea.  But, as said by Marcus Garvey when referencing  the black separatist movement, to “assimilate” meant to conform to white expectations of behavior at the price of sacrificing black identities and cultural values. Additionally assimilation is sort of nonsensical in that it, no matter how well a person can assimilate values, behaviors and beliefs, at the end of the day we can still see that that person is black. 

I think we are all keenly aware of this situation for black Americans.  We may not all feel the same way about it but we are aware of it.  We may not though be as aware of this same situation for people with disabilities. While some concessions have been made to make society accessible to more, it is certainly not accessible to all.  I am not only talking about physical accessibility like curb cuts, ramps, wider doorways and elevators.  I am also talking about attitudinal, emotional and social accessibility.  I have encountered many people who have family members with signifiant physical needs.  They use wheelchairs and AAC, they need to have someone feed them or they have a GI tube for nutrition, their bodies are not straight and well aligned. Basically they look different and act different and need different things than their non-disabled peers who happen to be in the majority in pretty much any environment. Some of these families do not want to take their son, sister, nephew, spouse out to restaurants or movie theaters because they think they will be disruptive or make others uncomfortable.  Some wont do it because they feel uncomfortable because they are different and are often stared at, others because they do not like the patronizing approach many take with people with disabilities. This is all sort of reminiscent of assimilation.  

Society likes familiarity and sameness and conformity. Even if we can see that you are not "the norm", at least act like it.  But that only works for that majority, that privileged group with the power--for this conversation that would be non-disabled people. For years people with disabilities have been isolated an segregated and separated from the "norm". Once they were allowed to go to school (another topic for another time!) they were sent to separate schools, special schools, schools where they will be around people like them. Sound familiar? Even now when kids with disabilities, by law, attend the public school they would attend if they were not disabled, they are often segregated into separate classes with other kids with disabilities. So really is it any wonder that society does not know how to act around with people with disabilities? Most non-disabled people have never had any interaction with people with disabilities.  As youth, they were never in a situation where they could potentially befriend a person with a disability. Our attitudes begin forming while we are very young.  If we are only exposed to certain people, cultures, characteristics, attitudes, beliefs etc we can never form opinions or attitudes or even feelings anything "different". 

We have made this realization about race and religion and ethnicity (though we still have a long long way to go) but we have yet to make it about disability. Schools are full of people of various races, religions and ethnicities all intermingling and having the opportunity to learn with and about each other and form friendships and other lasting bonds. I think part of the reason for this is that for race and religion and ethnicity we have decided that, in general, they are all equal. Now I know this can be argued. Personally I know that no one race, religion or ethnicity is better than another but there are those among us who do not think this way. But as a society as a whole we have made a concerted effort to put constructs into place to limit discrimination based on these things. Federal laws prohibit discrimination based on a person's national origin, race, color, religion, disability, sex, and familial status. Laws prohibiting national origin discrimination make it illegal to discriminate because of a person's birthplace, ancestry, culture or language. Notice that disability is included in there. So why do we still discriminate? I think it is mainly due to ignorance and lack of exposure. 

In school, we tend to segregate kids with disabilities. Not only does this send a message to the kids with disabilities and their families, it also sends a message to everyone else.  I have heard so many justifications for why kids with disabilities are segregated in school--they have such unique needs that they can only be handled in a separate place. They are more confident and comfortable with kids like them. It is safer to keep them separated from the general population. All of these are basically a bunch of hooey. These are all rationalizations made by non-disabled folks for not having to change the status quo of the environment to make is more accessible to ALL learners.  Let's take a look at each of these justifications for the need for a separate place.

• These students have such unique needs that they need to be handled in a separate place--Why? There are few needs that are so unique that they need to handled elsewhere and most of them would not be delivered while a child is in school anyway. Most of the time this argument is more about the "disruption" to the other children's learning, the cost of having to change the environment to meet that one child's needs, or the contrived feelings of happiness of the child with a disability being educated with other kids like them--it will make them feel different if they receive said service in the general education setting.  All of these "reasons" are excuses. The "disruption" argument only holds water because most children are simply not used to having peers with significant disabilities with them in the classroom.  Having a child enjoy lunch via a GI tube, use a stander or other flexible positioning while in math class, use AAC to engage in the class debate, have a trach or a ventilator to be able to join in any activities are only disruptive if you've never seen them before. So by isolating children with these needs their peers never see them and therefore they becomes disruptive when they do, but if kids receive service to meet their unique needs with their peers as the norm, then it is just that--the norm.  And that attitude will carry with them forever. It is no longer disruptive, it is just different and part of who that child is. As for cost, it may cost a school a bit of money to provide a specific service but that is simply no good reason not to do it. And likely but being flexible about how and where and by whom services are delivered, the cost will even itself out. The argument of children with disabilities being more comfortable with other children with similar needs so they do not feel different is an extension of the disruption argument. Children with complex needs will default to being more comfortable with peers with disabilities mainly because their peers without disabilities are not comfortable with them, because they never see them or engage with them so kids with disabilities essentially need to default to finding a comfortable peer group among the children they see daily--other children with similar needs. It is a vicious circle.
• They are more confident and comfortable with kids like them--again is this related to the above arguments about comfort and happiness.  If children with disabilities are alway kept away from peers without disabilities this will become a self fulfilling prophecy for all involved. We need to remember that school is supposed to be preparing children for the rest of their lives and IDEA even says that upfront: "Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities...[and] to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living" (IDEA 2004).
• It is safer to keep them separated from the general population. Safer for whom? Once children leave school they will not be protected by being segregated.  There is no Autism Movie Theater or Down's Syndrome Restaurant.  By keeping children with disabilities isolated from the broader school environment we are actually hindering their safety. All people need to learn to interact and live side by side with all sorts of other people.  We need to understand, respect, learn from and teach each other. When people with or without disabilities do not know how to interact with one another or to understand one another, that is when safety can become an issue. The biggest place I see this is in social interactions.  When the actions of a person with a disability are misinterpreted (or actually interpreted through a lens of what society considers the norm) this can lead to very devastating results. For example, if a person using a wheelchair accidentally bumps someone because the physical environment is not conducive to wheelchair use and causes harm to the person, we do not blame the environment, we blame the wheelchair user. If a person with significant sensory needs resists being grabbed by pulling away and vocalizing loudly, this is often seen as aggressive.  This has been seen as aggressive by the police even after they are informed that the person they are engaging has autism and will continue to escalate if they are restrained further. These types of safety issues can be diminished if individuals with disabilities are seen as people first starting from the beginning.

We tend to see the disability first and think of it as a deficit and a barrier to full participation in any and every thing. We see the disability as a liability. DIS as a prefix means "not or no". So by definition disability really means "no ability".  That is so wrong and sad and infuriating! We need to stop thinking about people with disabilities as not being able to do things, or participate in things. There may be barriers but we need to start considering how to remove the barriers or adjust the environment to make it more accessible to more people.  And remember the environment is not just the physical space.  It also extends to all the people in the space, including their attitudes, beliefs and perceptions. 

Like Einstein said, if we keep doing the same thing and expect a different result that is the definition of insanity. To extend that if we never consider change nothing will change.  That is pretty insane too! We need to change the way we do things and think about things in order to grow. if we keep doing things the way they have always been done without considering the potential harm and benefit to all involved many people are left out, isolated, abandoned, feared, and frankly that is pretty insane.  In the immortal words of Maya Angelou, "do the best you can until you know better. Then, when you know better, do better." Well I think we know better when it comes to people with disabilities. So now it is time to do better.  And here is one easy change.  Let's get rid of the label disability and consider "differently abled". This can apply to anyone because, in reality, we are all differently abled.