Tuesday, October 1, 2013

My thoughts on the TVB Pearl documentary

Last night, our family sat around the TV, popcorn in hand, eagerly awaiting for 8pm to come around so that we could see Maddy on The Pearl Report. It was an honour to be involved in this documentary and I think it was pretty cool how it aired on the eve of Dwarfism Awareness Month (October). 

The show is available online on the Pearl Report webpage here (for a month or so only), or on youtube, linked below in two parts. 

As the show started, I began to cringe at a lot of the terminology being used. "Wheelchair-bound", Lana being "normal", my "fetus"? "The painful choices they make to live normally". Even in my education degree, as we studied inclusive education, we were taught about terminology which victimises those with disabilities or differences and terminology which is neutral. It's not just about being "politically correct", it's about what these terms imply... I would have thought that the media would have had more awareness about such issues - but maybe it's just Hong Kong. Here, doctors still use the word "retarded" instead of "has an intellectual disability".

Most people who use a wheelchair are not "bound" by it - instead their chair gives them freedom of movement they would not have without it. They use a wheelchair to gain mobility and independence - it is a wonderful thing, not a "prison". 

In addition, using terms like "normal" imply that kids like Maddy and Nathan are "abnormal" when nothing could be further from the truth - they are in every way as normal, boring and even average as any other kid their age, they just have one little difference which makes them stand out. Many times, it is the first thing someone would notice about them - but in terms of their entire lives, experiences and personalities, they are far more average than these terms imply. "More alike than different" is a slogan I have heard and love - and using terms that emphasise these differences implies that this is not the case. 

Finally, "fetus"? For a third trimester pregnancy which is both wanted and loved? I heard someone making the point recently about William and Kate's baby - it was never "fetus", even yet unborn, that child was "the future king".  Why not just say "Their third daughter, due in December..." or "Their future child...", something like that?

I did feel that the terminology used did portray (in my opinion) a negative perspective. I was afraid of this in advance and even comment to the producer that I hoped this would not be the case. I didn't want anyone to see this and pity us. 

Looking beyond the terminology, however, I thought that Maddy was gorgeous and exuded with joy and life - which is exactly who she is. I also loved that in the segments that we were involved in, I could feel the common thread of "hope" - from the final part of the first half, talking about hope for the future, to the little "Hope" decoration that was in the background of the video footage inside my home. 

Similarly, I loved the segments about Serene, Dennis and little Nathan (and Maddy was so excited to see her friend on TV as well!). There were worries and challenges discussed, but I loved how his segment ended, with Dennis discussing how Nathan will be able to "stand up to the challenges ahead" with or without drug therapy and interventions. 

A few other minor comments: firstly, I didn't have to travel to the US to see Dr Mackenzie - I was going there for a wedding and figured "why not" since I was already nearby. Secondly, why didn't anyone tell me that my tag was sticking out at physio?? Thirdly, I'm not 34 weeks pregnant - as of the air date, I was 30 weeks. Although I WISH I was 34 weeks! And finally, I asked them not to put any "tummy shots" of the ultrasound on TV - but now my lovely pregnant tummy has been broadcasted all over Hong Kong!!

Watching the show, and knowing all that I know about our experience, Nathan's experience, dwarfism in general, I have to say I didn't think that the 30 minute show even really scraped the top of the iceberg - I wanted to know so much more. I knew there was so much even of our story that was cut - and other parts which were not filmed due to deadlines. I was left wanting to know more.

I have to add though, generally I don't name our doctors and hospitals publicly but since the show has already done it, I have to say that Dr Michael To is one of the best doctors in or out of Hong Kong that we've seen. He's remarkably sensitive and doesn't forget that he is treating real human beings - kids with families, schools and lives to live. In addition, there have been multiple times that I have emailed him with various questions and he has always responded so quickly. It is so rare to find those characteristics anywhere in Hong Kong, even in private clinics let alone the public hospitals. I have a few friends who also see him and have never heard a bad word about him - everyone who has seen him speaks so highly of him. We are so lucky to have him as Maddy's orthopedic doctor!

Thanks TVB Pearl and the doctors and other families involved in the making of this documentary. It was a great and eye-opening experience and I'm so glad we had the chance to be involved in it :)


  1. Your Maddy is absolutely beautiful!!!!!!! What a sweet little girl you have. Congratulations to the whole family on the new baby. Alicia from California

  2. Congrats! Maddy and her mama are great actor. I am very happy to watch this video.. so I watched it again with my husband. There's also the part that touched my heart, reminding me my late daughter.
    Related to your comment about the terminology used, ya..there are not suitable to use. If I in your place I also feel unsatisfied. By the way..as a viewer I am not concerned about the terms used but the importance thing is the message they want to tell us. So..don't worry. This documentary give me a lot of info on the real life of this special person, their parents perspective and hope. The best part is there are a treatment that can lengthen the bone by Ass Prof Danny Chan. Previously there was no treatment for this problem. I think this is a good news for condroplasia to give them better life. Do you want to try this treatment for Maddy? Although its hard and painful but for Maddy future..to make her more comfortable and confident to compete with public I think you and husband should think it...