It gets worse. @AirCanada refused to let me fly after I showed the flight attendant Air Canada’s own email about the law & policy for storing Emery’s wheelchair in the closet. Then they kicked @lilygelissen my 17 yr old daughter off when she asked for the flight attendant’s ID…
to file a complaint. @AirCanada said they were kicking my disabled son Emery (who has #DMD) and husband off too. I quietly and calmly explained that we didn’t have enough meds for Emery to not get home (no certainty of when we would get home) and he could go into cardiac arrest…
I also shared that he is terminally ill and his 16th birthday party is tomorrow in Toronto, begging them to do the right and moral thing and let me and Lily fly home…@AirCanada attendant and desk refused to connect me with the medical assist desk or their decision maker…
I don’t know where Emery’s wheelchair is, I wasn’t permitted to say good bye to him (yup - feeling this - no parent of a sick kid should be in this spot) and no one @AirCanada was willing to tell Katie the flight attendant to do the right thing…
@AirCanada attendant wasn’t willing to give me or @lilygelissen our bags which were already on the plane. 5 minutes of explaining that we needed our own meds &…passports (& it seems likely that they can’t fly with baggage for “deplaned” passengers) and they handed it over…
Stress causes Emery to be tachycardic - I’m in Phoenix worrying if he is ok on a 5 hour flight that was already delayed. Heart rate at 145 beats per minute on a plane is what @AirCanada has me worrying about…
I’m going to write more about this and follow up with @aircanada as this is a training issue and a human rights issue. It feels brutally ironic that I act as counsel for @maayanziv with my partner @civil_lawyer after their egregious destruction of her wheelchair…
I’ll wrap it up now by saying…we need to do and be better. Our world is made up of people with many abilities & disabilities, with medical complexities & health. We are always #BetterTogether and as Emery’s mama I’m not going to rest until @AirCanada and all airlines #DoBetter🙏
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Apart from retweeting where to get vax’d I haven’t said much on Twitter so far about the pandemic. That might be me trying not to rock the boat, it might be fatigue and low grade D, but the anti-vax protests affecting access to hospitals has driven me to the brink 1/
In December I lost most of my vision due to a brain lesion. Spent 2 weeks in neuro ward, recovered slowly over next couple months. Losing your vision is scary as shit, it also resulted in me having a super heightened startle response - an unanticipated move or sound 2/
would make my heart pound, make me sweat and tremble. Recurred in March but kept more vision on the right. Phew.
My tx has nuked my immune system.
My husband has been my caregiver, champion, my everything thru this…oh and also my driver cause well vision-driving- you get it 3/