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. 

Getting Started

    

So I have never blogged before. Nor have I journaled or written out my thoughts in any way other that emails and texts. But I dream of writing a book some day so I decided it was time to start getting my thoughts and ideas out of my head and into a more concrete format. A friend and colleague suggested blogging.  I also dream of being self employed as a consultant so this will also serve as a means for me to lay out those things about which I would like to consult.

    I am and have been for as long as I can remember an advocate for folks with disabilities.  I am a sibling, a friend, a teacher, a consultant of/for individual(s) with disabilities. I have been at this for a long time and my views, attitudes, ideals and knowledge have grown and changed over the years. My brother is 5 years younger than me. I am 58, he is 53.  He has cerebral palsy. He has needed help with pretty much all basic daily living functions forever and I have always (though at times reluctantly) assisted as needed.  

    I will likely write more about him and our relationship at another time in an entry or two or eight devoted to my musings about being a sib. I will also talk about my views etc on school based services for students with disabilities, how FAPE is the least common denominator when it comes to said services, the purpose of those services and the purpose of the IEP and ETR (and all the people named in those docs), preparing students with disabilities to leave school ready for the next step, preparing adults in schools to prepare the kids for the rest of their lives rather than just getting them across the graduation stage, the construct of disability and how I see it as a demographic detail rather than a condition that needs to be changed (I think the environment needs to change to be more accessible to folks that identify as disabled, which includes people in general and their attitudes and beliefs)....wow that is a lot and I am not even done.  I guess blogging is not a bad idea.