Wednesday, February 1, 2017

Seeing Is Believing...And Not Judging

"You're so lucky your daughter's in a wheelchair!"

That was said to me by a fellow mom at a parent support group meeting I attended when Emily and Hannah were young.

"Excuse me?!" I responded.

"My daughter is autistic," she explained, "which is quite debilitating for her. But she looks normal, so people judge her...and me. They have no understanding of or patience for her disability because they can't SEE it. Your daughter is in a wheelchair. People know right away not to expect normalcy from her, so they're more likely to accept her for who she is. I'm jealous!"


Fast forward about 20 years. I now have a 21-year-old daughter who is still wheelchair-bound and a 24-year old (fully mobile) daughter with high functioning autism and mild to moderate cognitive delay (translating to social, developmental, and emotional abilities of about a 12 to 14-year-old. It was diagnosed a year or two after that particular parent support group meeting). There have been many times over the years when the words of that conversation have rung true - but probably none so blatant as a recent flying situation we found ourselves in.

Emily has flown to New Hampshire alone a few times to visit her best friend, Stacy (who happens to also be her ex-stepmother, a.k.a. my ex-husband's second ex-wife...but that's a story for another time). In the past we've always gotten her onto a direct flight from Seattle to Boston, knowing she would struggle with the challenge of changing planes in a layover.

Emily wanted to spend Christmas with Stacy this year, but for some reason the direct flights were much more expensive than usual. I did find, however, that a few airlines have programs for adults needing assistance with plane changes, much like the program most airlines have for unaccompanied minors. Delta is one of those airlines. When setting up Emily's travel plans I was told,

"All she'll have to do is walk into the airport, approach anyone at the Delta counter, and discretely say the words "Greet and Assist". Our agents will walk her through security and accompany her to her gate. At the second airport someone will meet her as she exits the aircraft and help her to her next gate."



Perfect. On the day of travel I printed out Emily's boarding passes and, indeed, found the words "Assistance Required" printed right there in black and white. Excellent. To make absolutely sure there would be no confusion, though, I also gave her an index card to carry, which read, "I'm in the Greet and Assist program and I need help, please." I told her if she had any trouble, to hand that to any Delta employee and they'd know what to do. Feeling nervous but reasonably confident, I dropped her off at Sea-Tac. She kept in contact with me by phone and text. Everything went swimmingly. The Delta agents were all helpful and respectful. She felt very much at ease and was pleasantly surprised when they informed her that her status allowed her to board the plane first. She wouldn't even have the stress and anxiety of bumping her way through a crowded plane as she nervously looked for her seat number. Fantastic!

A few hours later I got a call from Emily from Minneapolis, where she was switching planes. "Mommy! There's nobody here!" she yelled, in a panic.

Trying to keep my voice calm and even (despite the fact that I was more than a little nervous because I didn't know how long her layover was) I said, "It's okay, sweetie. Just take a breath, go up to the desk, and ask the person there for help, just like we talked about."

"They can't help me; they're too busy helping people onto the plane I just got off of," she said in near tears.

Obviously they wouldn't be boarding that plane so soon after she walked off; her response just demonstrated her level of distress.

"Breathe, Emily, it's going to be okay. Here's what we're going to do. You're going to go to the closest person in a Delta jacket. I don't care if that person is talking to someone, on the computer, or whatever - you will interrupt them and say, "Excuse me; I need help right now." Keep me on the phone so I can be with you until they've helped you."

She approached someone and said, "Excuse me. My name is Emily and I'm in the Greet and Assist program, and I need help getting to my next gate."

"The what program?"

"Greet and Assist."

"...and HOW old are you?"

"Twenty-four."

[pause] "Uh...John! Will you help this woman to her next gate?"




I hung up the phone after Emily reported she was on a golf cart, headed for her next gate. I told her to text when she got there.

I got a call a few minutes later. Emily was, again, desperately trying to hold back tears. "Mommy, I'm in the area where my gate is, but I still don't know which is the right one."

"Didn't the man take you to your gate?"

"When he dropped me off he said, "Your gate is around the corner to the left," but there are a lot of gates here and I don't know which one is mine!"

"Okay. Can you see one of the screens with the flights listed?"

"Ummmm...yeah..."

From there we determined which gate she was supposed to be at and that she had about 45 minutes until she needed to board. I suggested she get a snack, and when someone got to the desk, to ask if she would be able to board first again, since that had been so helpful in Seattle.

She later called me from the plane, reporting that she had been one of the first people to board, but not until after she had nearly the same conversation she had had when she got off the previous plane.

"Hi. My name is Emily and I'm in the Greet and Assist program. On my last flight they let me get on the plane first. Will it be okay for me to do that again?"

"The what program?"

"Greet and Assist."

"...and HOW old are you?"

"Twenty-four."

[pause] "I guess...if you feel like you NEED to."



A few days before her return trip home, I called Delta and explained the "Tale of Two Cities", where their Seattle employees were the perfect picture of respectful assistance, and their Minneapolis employees...might benefit from a review of Delta's program, since none of them appeared to have heard of it. Not only had Emily told them the name of the program, but "Needs Assistance" was written right on her boarding pass! Attempting to bring the point home that getting help should not be so difficult under those circumstances, I said, "I mean, multiple people have told us we should just put her in a wheelchair when she gets to Logan airport, so maybe someone will ACTUALLY help her!"

The customer service representative shocked me with his response.

[slight pause] "Yes...yes. That's a good idea. Put her in a wheelchair as soon as she gets to the airport. She'll get help, then. And I apologize for her stressful experience on her last flight. I'm upgrading her to our Comfort Plus seating for both flights on the way back to Seattle, so she'll not only be the first on the plane, but she'll be first to get off the plane, too."

I called Emily and explained the plan. She didn't understand. It broke my heart as I tried to explain it in a way that wouldn't insult her or make her feel self-conscious. She said, "But if I'm in a wheelchair, won't the other passengers wonder why I'm not walking? Won't they think I'm just being lazy or something?"

"No, sweetie," I said, "Nobody will say anything to you. And if they do, you can say you just had surgery and your doctor doesn't want you walking more than a few steps. BUT...we are NOT pretending that you can't walk at all. When you're on the plane, if you have to use the restroom, you GET UP and walk to the restroom. Nobody will think anything of it."

The entire trip back home went as smooth as silk. Everyone happily helped her along every "step" of the way. I'm relieved that it was a much less stressful experience for her, but it's sad and frustrating that people need the "visual aid" to accept that someone needs assistance. Sad and frustrating...but oh, so true.



29 comments:

  1. Invisible disabilities are so tough.

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    1. Thank you, as always, Anne, for taking the time to read my post! I know you have some experience with the challenges of invisible disabilities; they come in many forms! It's a good reminder for me that the physical ones are likely just as frustrating as the cognitive ones. I'm sure there are a number of times when you can just HEAR the thoughts of the person in front of you, "What's your problem? You look FINE to me!"

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  2. Thank you for this. You've given me ideas that I need to pass on.

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    1. Thanks so much for taking the time to read my post, Avery; I'm glad there was some good take-away information for you there! Take care and have yourself a terrific Tuesday! :) ~Stephanie

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  3. I just found out about this blog through Twitter and am glad I did. I will happily recommend this blog any chance I get.

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    1. Wow; thank you so very much! Take care and have yourself a wonderful week! :)

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  4. It's astounding how rude and uncomprehending people can be, especially in the service industry where they should be the most helpful. My sister is severely disabled and in a wheelchair. Recently, we flew to visit family (leaving the powerchair which can be problematic in it's own way behind and using a manual wheelchair) This was our experience upon arrival at the first gate: "Oh, right over here please!" The woman bobbed up and down with excitement. "I've been training for a week and haven't had a wheelchair yet!" Ironically, some code on my ticked allowed me to walk through the gate without having to even take off my shoes, and my sister was held up 15 minutes not only taking off her shoes but getting a full body pat down. When deboarding the flight, we waited 15 minutes and finally in fear we would miss our connecting flight, she awkwardly wheeled herself with the purses draping all over here, while I wheeled the two bags to the next gate. On the return trip, I went through the security check and looked around to find her gone. An attendant made a beeline to me and asked for her boarding pass-still she's nowhere in sight. In doing their pat down with some sort of chemical gloves, apparently some product in my sister's hair set off a code and they'd wheeled her to a private room where she had to wait for someone higher up to do another body pat down. I think ignorance is everywhere, not only in employees, but in the red tape.

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    1. Thanks so much for taking the time to read my post, Lacey, but thank you even more for sharing your experience. It was a gripping, heartbreaking tale, and I wish you hadn't had to experience it. I'm glad you had an opportunity to share it, though. People need to hear these stories so they can take pause before they interact with/react to people around them, and - as you pointed out - before they put into effect ridiculous "red tape-type" policies that tend to make the lives of those with special needs (and their families) all the more challenging. Thanks again, take care, and have yourself a wonderful Wednesday! :) ~Stephanie

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  5. I'm so sorry you and Emily had to go through this experience; it's heartbreaking to read about, but a strong reminder how utterly off-base our snap judgements about others can be.

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    1. Thank you so much for taking the time to read my post and for your kind words. It's human nature to judge. Sometimes, though, it's important to remind ourselves that our cynical views are not warranted nearly as often as we imagine. If you constantly hear about how "young people today" are lazy and entitled, then it makes sense that would be your go-to snap judgement, and - like you said - it's often way off-base. Thanks again, take care, and have yourself a wonderful week! :) ~Stephanie

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  6. So difficult, I don't know how you kept your cool, I would have been terrified for my child. Emily is brave also.. you have taught her well. God bless you all.

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    1. Thanks so much, Crystal, for taking the time to read my post and for your kind words and well wishes! Had this been a video, rather than a written piece, you would have seen me shaking in my shoes. Letting go and offering Emily a little independence is definitely a challenge! By the time she touched down in Boston, I was exhausted, having spent hours stressing, worrying, panicking, pacing, and kicking myself for ever being so stupid as to have let her out of the house on her own! I think these "exercises in independence" are good in the long run, though, because even if they don't go smoothly, she DID it. She made it through. She faced her worries about doing something solo and she persevered. I may never send her on anything but direct flights in the future (because of the number of years it takes off my life), but if I HAVE to, we'll both know she CAN do it...and there's a certain level of freedom in that thought. :) Thanks again, take care, and have yourself a wonderful weekend! ~Stephanie

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  7. I'm sharing this on Facebook to raise awareness! Yea for SeaTac Delta employees. Hope Minneapolis has now gotten it figured out!

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    1. Thanks so much, Sue, for taking the time to read my post, and for the share! I, too, hope the Minneapolis Delta employees have reviewed their policies! Thanks again, take care, and have a wonderful week! :) ~Stephanie

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  8. I usually enjoy your blogs but this me made me quite angry. I'M in a wheelchair and I can assure you that while some things are easier for wheelchair users than autistic children - most area not. I have autistic friends who often back me up on this. Disability is not a contest and this idea is very hurtful. Airports might be less stressful for your wheelchair bound daughter but I have had nothing but grief and lack of understanding. I'm sorry to be so negative but cannot help feeling cross

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    1. Thanks so much for taking the time to read my post, Natalie, and for sharing your thoughts. You certainly have no reason to apologize for sharing your feelings on the subject. While I know nothing about what it is like to be wheelchair-bound, (like I mention early in the post) I have a 21-year-old daughter who has been wheelchair-bound for life. Believe me when I say I know life is FAR from easy for folks who are in wheelchairs! Transportation is a nightmare (least of all air travel; auto travel is ridiculous in expense of accessibility and parking - even sidewalk use is outrageous with the oftentimes useless, unaccessible sidewalks). I completely agree that disability is not a contest. I have felt horrible in the past when chatting with fellow parents in the hospital. There have been times when they have shared how distraught they were over their child's 2-minute seizure or [single] heart defect. I totally felt for them and understood how they were feeling! Then they'd ask me "what we're in for" and I'd have to say it was her latest 5-hour seizure or her 7 heart defects. It's all relative. They weren't suffering any LESS because the diagnosis didn't sound as severe, and I HATED it when they would then say that they felt stupid for complaining about or freaking out over "something so small". No, no, no!!! Having a sick child is traumatic, REGARDLESS of degree!!! In all honesty and fairness, I believe that parent who told me she was jealous of my daughter's wheelchair status said it in line with "the grass is always greener" rather than "this is a contest and you win". Also - to clarify - it is not my oldest daughter's autism that tends to "cause her problems". I know lots of very functional, successful autistic people. It is her cognitive delay that tends to be problematic (as an invisible disability). The point of my post - and I'm so sorry this wasn't perfectly clear - is that it's not easier to be in a wheelchair - it's just easier for people to accept someone's disability and need for assistance when they can see it. I hope someday soon people (in general) have more trust when someone requests help (and less skepticism) when the need for that help isn't obvious, but we're not there yet. If they don't see the need for help [all too often] they assume the person asking for assistance is just being lazy or wanting special treatment for no reason. Thanks again for sharing, and feel free to keep up the dialogue. The only way understanding and growth can happen is if we share honestly and listen carefully. Take care and enjoy the rest of your day! :) ~Stephanie

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    2. I was just laughing out loud to myself, thinking back to that support group meeting when that mom said she was jealous. Another parent "complained" that the parent across the table from her had a daughter with "the Cadillac of disabilities" - Down Syndrome. She said it because her child's severe disability had no diagnosis (at that time, anyway). Lack of diagnosis is a particular challenge when trying to get services for your child or when you're trying to anticipate what issues you'll be facing as the child grows older. There is so much written material on the Down Syndrome population, it's nearly as "normalized" a having a typical child...at least when viewed from someone with a child with a rare diagnosis (or no diagnosis at all). :) Boy...politically correct is certainly not a good description of THAT meeting, huh?! :)

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  9. No parent is "lucky" to have a child with any disability. While I think I understand where that parent was coming from, as the parent of an adult child with an invisible disability, it was a poor choice of words. It's a reminder to always be sensitive and nonjudgemental with others. BTW - to be clear, ALL children bring many blessings and love into our lives, disabilities, struggles and all. If we are wise as parents, we will learn more from our children than they will learn from us.

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    1. Thanks again, Karen, for taking the time to read my post and for sharing your thoughts. You're right to assume that that mother's comments were said innocently and without malice. While it's important that we all take care to not be offensive, context is everything. A friend of mine was on a support site for families of children with Down Syndrome. I forget what the topic thread was, but she chimed in, saying "My little Downie does that, too...". Well, she was ripped apart by 2 or 3 parents for being a hateful, insensitive bigot. She was devastated. She used the term as an endearment, much like a parent of a blonde may say "my little toe-head" or parent of a left-handed child may say "my little lefty". She is someone who worked with me for years at Seattle Children's Hospital, then quit her job so she could become a full-time foster parent for medically fragile children. She has taken in a dozen or more of these kids over the years, and has gone through the painstaking, expensive, difficult process of adopting at least 4 of them (including the little girl with Down Syndrome). In my eyes, she's a hero. Sometimes I think people get so hung up on words that they completely lose site of context, and it's such a shame. There are people who truly say some hurtful, disgusting, disturbing things. THOSE people should be reprimanded...not parents who are just trying to participate in a support group...if it can even be called that when you get reamed out the way she did. Thanks again for sharing, and enjoy the rest of your day! :) ~Stephanie

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  10. I just discovered your blog. I'm sorry for this terrible experience but cudos to you for putting it out there and drawing attention to the problem. I love your formatting. It is very similar to mine. I am now a fan. https://t.co/HtLNsKlA2i

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    1. Thanks so much for taking the time to read my post and for your kind comments! I checked out your website and enjoyed it very much. The colors, the content, the backgrounds...it was like enjoying a cup of herbal tea (in visual form). Thanks so much for sharing; I signed up! Take care and enjoy the rest of your weekend! :) ~Stephanie

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  11. What the wheelchair does (autistic child is 7) is also a visual aid so you don't get as many judgemental "bad mother" looks when she's rolling on the floor at the supermarket.

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    1. Thanks so much for taking the time to read my post, LJ, and for sharing your experiences. Yes, I know the "grocery store glares" you speak of. So sorry you have to put up with that nonsense, too. If a wheelchair helps you and your child to feel more comfortable when you're out and about, then you GO, GIRL! ;) In the meantime, thanks again, take care, and enjoy the rest of your week! :) ~Stephanie

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  12. My heart breaks for you both. My daughter and I both have invisible disabilities and it is so, so hard. In recent years I've deteriorated enough to need a wheelchair more often and I get much better treatment then. I've often felt so bad and misunderstood that I've thought about shaving my head so I look different. My hair is falling out anyway so why not? I just find that in the UK people are so judgemental and rude. But when I'm in a wheelchair I suddenly get sympathy for needing one so young. Sadly, it's the older generation, who should know better, who I find to be the worst.
    Your daughter was very brave to use the wheelchair. My brother is autistic and I there would be no way he would agree to it. He hates that I have one and won't be seen with me. I feel very proud of your brave, strong daughter. I wish you all well. Cath xx

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    1. Thank you so very much, Cathy, for taking the time to read my post and (especially) for sharing your story. I'm extremely sorry to hear there has been a deterioration in your health. I hope for improvement for you, but if that isn't possible, I hope for no further deterioration. I'm glad there's at least the little silver lining that people are being more kind now. I wasn't surprised by my daughter's confusion about using a wheelchair and worries about what people would think of her, but I never even considered that she might refuse (like it sounds like your brother would), so I guess I now have that to be thankful for! :) I hope he can grow accustomed to the change in your situation (as it's typically just the change - regardless of whatever the change is - that is hardest to accept). Thanks again for sharing, take care, stay strong, and have yourself a wonderful week! :) ~Stephanie

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  13. I'm so sorry your daughter recieved such a scary experience. I'm a little stressed when I travel because I'm physically challenged. I can't imagine how it was for her.

    I had bilateral knee replacements that failed to work and actually caused more damage than good. Therefore, although I can walk, I cannot walk long distances and walk in great pain with a very pronounced limp. (It's very difficult to limp on both legs, since I have pain in both knees, so you can imagine my gate is very unusual. Anyway, this makes traveling and making connecting flights very challenging for me. I always have to have a wheelchair meet me at arriving flights. However, at the busier airports I normally find that my wheelchair is never there waiting for me. I almost always have to contact a gate agent (if she one is at the arriving gate) to find me a wheelchair agent. Then, I have to sit and wait, worrying if I'm going to make my connecting flight. Due to this, I've now had to book flights with extended layover times to accommodate this delay.

    With the price of tickets, you would think that airlines would 1) in your case, better educate their agents as to their own programs for the disabled (it should be a requirement) and 2) hire sufficient employees to ensure incoming flights requiring wheelchair agents have those agents available upon arrival of their flights.

    Again, I hate your daughter was so stressed. I sincerely hope that her next flight is much better.

    See you on Twitter!

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    1. Thank you so much, Jennie, for taking the time to read my post, and [especially] for sharing your story. I got tense and nervous just READING about your layover experiences; I can't imagine the stress you've felt in those excruciatingly long minutes that you've waited for a missing wheelchair to be delivered, all the while envisioning a closing gate at the other end of the airport! You're right; if airlines are going to reduce their number of flights and pack us in like sardines in an effort to save money, then the least they can do is have sufficient [well-educated] man-power to handle the needs and requirements of all the passengers! Thanks again for sharing, take care [especially take care of those knees; I hope you're able to walk more comfortably soon!], and have yourself a wonderful weekend! :) ~Stephanie

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  14. Wow, I am sorry to hear about her experience. I hope things will be better on her next flights.

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    1. Thanks so much, Jessica, for taking the time to read my post, and for the kind words! I think we'll be just doing direct flights for the foreseeable future. We made it through that ordeal and learned a lot from it, but I don't know if my nerves could take a second stab at it! :) Thanks again, take care, and have yourself a wonderful weekend! :) ~Stephanie

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