A Visible Disability

June 17, 2011
Ballet08d

Just when I was unsure what I would write about, British Airways comes to my rescue!  If reports are correct, a British Airways employee told the mother of a 12-year-old girl with Down syndrome she could not fly unattended.  Other 12-year olds are allowed to fly unattended.  The mother was told that if she had an invisible disability such as autism, she would be allowed to fly. Upon further inquiry, the mother was told that there had been “problems in the past”.  You can read the article at Metro Online.  Now, this leads to all kinds of discussion ideas. Several folks have posted that this mom must have no common sense to want her “Downs daughter” to fly alone because “Down’s syndrome has all kinds of symptoms”. First, we aren’t discussing parenting skills here. I have seen eight year olds without any visible disability who could very well fly alone, and I have seen adults without any visible disability who should not be flying alone.  I would ask the author of that particular post how many people with Down syndrome do you know?  Further, could you please explain the symptoms of Down syndrome? Do the airlines deny access to out of control kids who have parents with bad parenting skills?  I’ve endured several of those flights.  The issue of whether her parents should allow 12- year-old to fly alone is a separate issue.

First up is the legal issue. I posted the link to this story on FaceBook and have had many comments and thoughts. One premise was that if a company does business in America they have to comply with the Americans With Disabilities Act.  If legislating morality or common sense was only that easy.  As most of us who advocate for those with visible or invisible disabilities know, it is not that simple. Federal disabilities education legislation, IDEA (Individual with Disabilities Education Act), was passed in 1975. It ensures a “free and appropriate public education” for students with disabilities. The interpretation of that is all over the board. A few years ago a principal told a friend of mine that if left to her “those children would all be at the end of the hall in a special classroom.”  It’s the law but it is still a challenge for many parents to get their children what the law guarantees. This is in spite of the fact that over forty years of research shows that inclusion works. Many schools are doing an outstanding job of educating students with special needs. We have been very pleased with the progressive attitude of our current school system. Many districts are doing a good job in spite of the fact that the federal government passed IDEA with a commitment to fund at a 40% on the federal level.  The federal government has never funded it at near that level leaving states and local schools to find the funding.  That does not excuse the system for though. I speak to people on a regular basis that go round and round with a school system over something that that law says. For example, I have a friend who is new to world of special education. Her teenaged son is now on a 504 plan. One part of it ensures he will get extra time to complete tests and assignments. The teacher is not following this. The mom told her the law says you have to do this. The teacher’s response: “Is that a threat?”  Once when I was going to speak to a group of students destined to become general education teachers, I ask an educator friend what is the one thing she would like me to say to them? Her response “I get tired of hearing teachers complain that accommodations and modifications aren’t fair. The kids should do the same work.  I just want to say ‘Let me tell you what’s not fair.  It’s not fair that any child has cerebral palsy, Down syndrome or autism.  That’s what is not fair.”  The law gives families their basis and without the law many students with disabilities would still be turned away from the public education system, but it is far from being perfect.  I would simply say f you are naive enough to believe that because the law says it that it is happening, then “if if’s and buts were candies and nuts, we’d all have a wonderful Christmas.”

Next up is using past issues or lack of understanding as a basis of denial.  If you read the British Airways story, the employee stated “we’ve had problems in the past.”  I chuckled when I read this because we just had this discussion in a parent training session I led the other night. Several parents told me that when they called to register their children for soccer or riding they were told that we don’t take “those” kids. They have special programs for “those” kids. “You’ve never met my child?”  We’ve had problems with “those” kids in the past though. That isn’t my child though? I wonder do they turn away every redheaded child because one redheaded child was a problem? A friend of mine tells the story of her daughter who has Down syndrome being kicked out of dance class at the age of four. When mom inquired as to why she was told that her daughter was hiding shoes from the other children.  “Do any of the other children do this?”  Of course the response was yes because this is typical but correctable behavior for any four year old.  The child remained in the class. When Rachel was about two and a half years old I was looking for a typical preschool for her. The public school preschool was self-contained with no typical peers and we didn’t think that was a good fit or legal option for Rachel. Many of the preschools where we lived didn’t take children with disabilities.  Most were Christian so that really does beg the question “What would Jesus do?”  Back to the topic at hand though.  I called one church preschool that had a pretty good reputation. “My daughter has Down syndrome. I’m looking for a preschool.” “Does she have aggression issues?”  Stunned I said, “Excuse me? She has Down syndrome.”  She told me that they previously had Down’s children and “those” children” could have aggression problems.  About two minutes and five “those children” laters, I said we didn’t need to talk anymore because my daughter would not be coming there. She told me I didn’t understand and I told her I totally understood and it was their loss. Unfortunately, those of us who have loved ones with disabilities live in a fishbowl. The expectations are higher and when anyone stumbles we are all punished.

Now it just seems appropriate to include this little story for my wrap up. Rachel went to get her hair cut this week. She and I use the same salon for our services, but I didn’t have an appointment. The stylist and Rachel went on their merry way to do their thing. This is a good way for Rachel to build her independence.  While I was waiting the young woman sitting next to me who was probably in her mid to late twenties said, “Does she go to public school?”  I responded yes. “Does she get made fun of a lot?” she inquired with great pity in her voice.  “Excuse me?” I said in somewhat confused tone.  She repeated her inquiry and I said, “Why would she be made fun of?”  “Well you know because of the Down syndrome.”  I simply smiled and said we’d had some bullying and some issues but all of us are made fun of at some point. “Weren’t you?”  She responded that was true.  I wonder if Rachel had been acting like an out of control alien if she would have asked me the same questions? A visible disability.

Just for fun – Jonathan and I asked Rachel, who has flown with us numerous times and how just turned 12, what she would do if she were riding on an airplane without us. First she responded that she wouldn’t go without us.  Good answer.  Then, we re-crafted the scenario so she would get on the airplane without us. What would you do when you got on the plane?  “I would eat my snacks and look at books.”  What would you do if you needed help?  “I would ask the airplane lady.”

For the record, I do not believe that this is British Airways policy. I do believe it was a misguided employee.  Still, it is very much the reality of life for many people with disabilities on a daily basis. 

NOTE: In the United States the preferred usage is Down syndrome. In Great Britain it is Down’s syndrome is still acceptable preferred language.

 

Marilyn Dickson responded:
Jawanda, I read and heard about the same article. My thoughts were abput other 12 years old who rode by themselves with the guidance of the attendants and I know that happens. Why not children with disabilities? I think later the airlines had to apolize it but the damage was done. Any one who knows children with disabilities and read that article had thoughts about that airline. It was all un-necessary.
Jawanda Mast responded:
Jawanda Mast
Mrs. Dickson – thanks for reading and your comments. I love it! Every situation has to be judged on the merits. But our families are turned away daily because they look different. I think it is a fear and education issues and we all just keep doing our thing!
Katrina Saunders responded:
Dear Jawanda,
My name is Katrina Saunders, I am Alice’s older sister. Thank you so much for covering our story. We have had a lot of negativity, saying that my parents are irresponsible for letting Alice fly alone and that 12 is too young to fly regardless of any disability. The fact is that BA will accept children from 5 years old upwards as unaccompanied but won’t accept our Alice.
However, these people are missing the point, this story is not about parenting skills, it’s about discrimination and that is illegal anyway you look at it. We have also had a lot of people telling us that we should sue British Airways, we have never even considered this. This is not about money or getting back at BA, for us, this is and always will be about raising awareness and making sure that people and businesses know that it is not okay to discriminate against people with disabilities or any kind.
Although BA have apologized, we are still waiting to be able to see their disability policy (which we asked for over a week ago) – it seems a bit odd to me that they won’t show it to us, surely if there was nothing to hide they’d show it to us right away as it’d help their case?
Any, one great thing that has come out of this is that British Airways have asked my mother to go and meet them and their diversity team to have them decided on the best ways that they can help flyers with disabilities and how they can be as inclusive as possible. This is a great result, regardless of the fact that at present their policy may be discriminative, they are trying to change it. They have also said that they are going to retrain all of their staff.My parents decided to go with the story for two reasons, firstly, as I said to help stop this kind of thing happening in the past, and secondly to help others out there who may experience similar discrimination realise that they can and should stand up for themselves and that we can change the way people look at disability, even in big businesses!
Thank you again – give you beautiful daughter a high-five from me!
I will be keeping an eye on your blog, it looks great!

Jawanda Mast responded:
Jawanda Mast
Katrina, thanks so much for posting. I hope I communicated the same point you are making. This isn’t a parenting skills issue. It is disability discrimination. And our families experience this in so many ways all the time. Please tell your parents thank you for stepping out there and making this public. Maybe someone will learn from it.
I believe we are all in this Down syndrome, differing abilities thing together and we need to support each other. I hope my blog is educating some folks!
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