Tuesday, November 22, 2011

Fire alarm


What an interesting experience.

I just checked into a hotel and was surprised to see, firstly, that they had an electronic desk that lowered so that I could sign in easily. OK, good start. Then, for the first time ever they had a form for me to fill out indicating what help I would need in an emergency. There were questions regarding how I needed to be informed of an emergency - differing options for people who needed alternative communication strategies. There were questions as to the best way to assist me and a place for me to fill in any other needs I might have in an emergency. I should also note that there was the option to sign off refusing to answer these questions.

Now, the room is on the first floor, Joe is with me, I have no concerns. But it doesn't matter, I was asked, the information on file. I told them that this was the first time in all the hotels I'd stayed in that I'd been asked these questions. They told me that they've only been doing it for two weeks. Apparently they had been reviewed by a health and safety person who had placed an emphasis on safety for disabled travellers. So, now they have this approach to ensure that they an individualize the emergency procedure.

I was really, really, pleased to see this approach. I've written here before, and in other venues, about the safety of people with disabilities in hotels and multilevel buildings. It was wonderful to see someone taking it seriously and doing something about it.

I've been sleeping well on this trip.

Tonight, I'll also be sleeping safely.


wheeliecrone said...

Brilliant! I hope that this becomes standard practice for hotels throughout the world.

Anonymous said...

Very impressive!! I'd love to get a copy of the form, or a picture of it, so I could approach the tourism sector, with this need. I know my son, even at home, will sleep right through the smoke alarm. It's nice to see businesses taking a role of respect and concern for the safety of everyone.

Boy, Andrew would have LOVED to lower and raise that counter! lol.

Thanks Dave and Joe!
~ Elizabeth & Andrew

I'd like to ask a question though on a different subject ...

What do you and others think of genetic testing? CHD's (congenital heart defects) run in our family, and Andrew has one. The pediatric cardiologist think he has some rare genetic disorder, that's linked with his specific CHD. When I read a lot of the information being newly discovered, a lot of the info describes other issues he has (or was born with - which are totally unrelated to the heart) ... so their suspicions may be correct. But, I was just wondering if others have been through this. If so, or if you have a viewpoint on the benefits, etc. of this testing, I'd appreciate your comments and if there's anything we should ask when we go for our appointment in January)

tks. Elizabeth & Andrew

Anonymous said...

Hello Elizabeth & Andrew, Regarding genetic testing - A couple of questions to consider. Genetic testing can be tricky, I try to avoid collecting more info. just for informations sake. Will a definative diagnosis change anything? What would you do differently if there are genetic links? Is Andrew going to have children? Something to think about.

Louise said...

Would you name and the-oppostie-of-shame them? I'd love to give them my custom.

dajmdrew said...

This is great - can you tell us the location and name of hotel so we can encourage this excellent Ora rise.

Anonymous said...

Dear Elizabeth,

due to been born with a complex congenital heart defect (and only been given 2 years by the doctors - today am 37 years old) I am sometimes encounterd with the question of genetic testing. One time even in an emergency hospital admission by a very keen young doctor.

I know that there is a 30% chance that a child I would have (if I would have a child - which is a very difficult question because a: I have difficulties to trust (men) and b: a pregnandy would be very difficult for my body) would have my or another very complex heart defect.

10 to 20 years ago doctors thought that a kind of chd like I´ve been born with was a spontanious gene mutation. But because my generation is getting older an especially men with chd have familys and kids the knowledge has changed.

And here is my personal opinion to genetic testing: If you want to have a child you should want to have a child. Take it as it is. No sorting out!

Genectic test is only helpfull in one case. If you know that you can help the child to a better start in life. For instance if you know that there is a chance that a child to be might have an elavated risk of arrythmias. Than it is good to know this so it might be treated in the womb by giving the mother medication.

But if you know that you have a chd in the family you should have an elevated ultrasound done before birth. This is something that in Germany (where I live) is not done routinly, but planned to be in the prenatal examination catalouge.

Sorry if there are spelling mistakes....

And best wishes for Andrew.


Anonymous said...

Thank you for your comments. You have all given me much more to think about and consider. I had no idea what to think. I know some of the syndromes associated with his CHD has also been linked with other issues such as: strabismis, high arched palate, autism, immunity problems, allergies, metabolic issues, etc. etc.

I wasn't sure if the genetic testing was only for purposes of whether he should have children or not ... and then, if he were to father a child, if the question of terminating the baby's life would be raised because of the genetic testing's results. For me, this would bother me. I know with all of the health problems my son has, I would never have traded him for anyone different than for who he is, right now. Andrew knows this; but, even when I was pregnant, the baby dr. recommended I not have my baby (abortion), as he thought it would be the best thing (for me, given my health and circumstances of being alone); but, I never entertained his recommendations, and I could NOT ever imagine my life without my son Andrew.

And, I think the world needs more individuals like my son, Andrew ... and be given the right to have a fulfulling and purposeful life, as we all should be able to do.

I know a more definitive diagnosis would help us know how everything is connected (ie. all of his various health issues), and it would somewhat give us a bit of "peace" knowing some more answers; which, I would hope would direct us for future decisions (ie. risks associated with certain things, etc.)

But, I know that having a more specific diagnosis is not necessarily a "good" thing, depending on "how" the information is viewed. For example, with my son's diagnosis of Autism, the expectations were immediately lowered at school (even though he was extremely bright, and actually caught on to complex ideas very fast compared to his peers). Again, this is not how things should be; but, like the discussions on institutional living versus community living .... much of the success, freedom and rights associated with community living, is directly relational to the education and willingness of those working to support the individuals, that we are all equal, despite our unique differences.

Julie, I'm glad you beat the odds. We (my son, my father, myself, etc.) all seem to have beaten the odds too, in many different ways. Some may say we're stubborn or determined !! I'm just glad to be me, and to be alive.

I'm not sure what type of CHD you have; but, my Dad had a heart transplant in 1994 ... and he has beaten the odds, just by living this long (and he has had (and currently has) many factors working against that). I hope we all keep beating the odds.

Elizabeth & Andrew

Lori said...

Dave, I'm a little late reading this post, but I would love to have a copy of this form or know the hotel so I could request one myself. I work for an Emergency Management organization and this is just the kind of thing we would love to promote with our hotels or other large venues.

What an awesome idea. Even though, like you say, you have Joe to assist, it's possible that he could be incapacitated depending on the emergency. Same for my son, I'd like a hotel to know his limitations in case I am not able to assist.

Thank you for a great post!