we're about to watch our little family which follows the everyday lives of the Hamill family who happen to be little people and I'm joined today by the lovely Pamela Ray Schuler I'm a comedian keynote speaker and disability Advocate let's get started we are a family of five and what makes us so special is that we are all small we're raising our kids to know life can be just as good small as it is tall I remember the last time I lost my tooth do you no I put it under the the pillow the tooth fa and then my dad's like I'm not giving you any money and I said what about the Tooth Fairy though he said we're Russian immigrants with no money what up Hamil have you seen this show no neither I'm in it I'm into it not in it oh I was going to say you're in it we have twin daughters and they are about to turn three their names are Cece and Kate and they are the complete opposite of Jack they are very high maintenance yes that's a q I agree fully which is why the twins are my favorite people already what's unique about our family is that we are all small and that we all have the most common form of dwarfism which is acondroplasia acondroplasia you heard of it yes acondroplasia is when you have a defect in changing cartilage into bone because when we're born we actually have a lot of cartilage that needs to aify AKA turn into bone those who have acondroplasia have normal size torsos usually and then have shorter than normal limbs upper and lower that makes sense so I'm 4' 6 and A2 so I'm of short stature but I don't have a specific diagnosis like ainop plasia I really think I just forgot to grow okay well that happens I'm little my kids are little I'm very proud to be a little person well all little together I think there's like a lot of these views that people with disabilities and differences are like sitting home sad and wishing our differences away in addition to being 4' 6 and a half I have Tourette syndrome and I think for a lot of us we've embraced the heck out of what makes us us and personally I don't wish to not be different but I do sometimes wish that the world was created a little bit more with with disabilities and differences in mind Jack just started kindergarten and he's riding the bus with all the other kids because we don't want him to feel any different is there any dangers that I don't see any dangers no you know I will say though the development of children who are born with acondroplasia there's an issue with where the brain stem turns into the spinal cord it's called the cervical medular Junction can sometimes be more narrow so when you pick up a child that has a controp plasure diagnosis you need to be careful and really support the back of their head so that it doesn't go back cuz they have injury no one should let me hold kids without like just at all when two little people have kids they have a 50% chance that the baby will be little then we have a 25% chance that the baby will be average size then we have a 25% chance that the baby will inherit the dorm Gene from both of us and if the baby inherits that Gene from both of us they call it a double dominant baby and after it's born it doesn't live very long in medical textbooks it usually says someone who is homozygous for this condition is incompatible with life um I would say there's a possibility they can be born and sustain life early on but then they usually and they're passing same day that I found out that I was pregnant with twins I also found out that I had a medical complication that there was a blood clot in the middle of the two babies blood clot in the middle of the two babies I'm guessing in the umbilical vein that's really rare they had told me that if that blood clot were to break within my first trimester I could lose either one or both of those babies in general pregnancy creates a higher risk for having blood clots that's a known risk okay um but having twins elevates that risk even more uh specifically later in the pregnancy luckily we were blessed that the babies got bigger and the blood clot got smaller but then we had to test to see if they had the double dominant gene first we found out that CC was going to be little and a girl just just wait that that's the most important and then we knew that she was healthy and it was going to be a girl do you think about or care about if you have a child what their height is going to be no I'd be more afraid that they'd be athletic like I can raise I can raise a kid of any height I can raise a kid with tourettes but like what am I going to go to a basketball game well you can watch it's really common for little people to have a fear of dogs I don't like I wonder how they'd feel about bear bear we're best friends hi high five oh he has to get his whole body up to do oh can I get one too bud oh thank you can I get one thank you buddy can I get one one more high five he's like Dad I give you 10 pleas just one more high five my turn oh oh you love you're a traitor you're my best boy you're a traitor Iver say people really don't think about it but imagine if dogs with the size of bears and they were coming up to you did she say size of bears he carry a stool because you used to have a stool from first grade through I mean eighth grade I live in a studio apartment in New York City and I have six stools in one apartment I can't reach my microwave because in New York they put them above your oven stove whatever that thing is in my closet I can't reach 80% of it I have a stool there I have one in my bathroom because most of the storage is above the sink in my living room I've got one because my bed is a normalized bed and I have to run and jump into it and sometimes you don't want to be an acrobat today we are meeting Jack's teach and to be honest I'm not exactly sure what she's going to say does he ever like sit there and go oh Mrs Clayborn I can't see he told the boys and girls you guys need to move over cuz I cannot even do the rectangle Rumba so he moved himself to the front and stood right in front of the self- advocacy yeah I love that I think that's something we should be working with all kids not just kids with disabilities and differences like how do you how do you speak up if you're not getting what you need to be successful I talk a lot about disability inclusion but in reality we all need different things at different times to be successful this high you can go to the left Jack I think and then I think the girls need to go to the right it's the same thing it goes to the same place at the bouncy pillow we had to make a decision do we send Jack with people his own age or do we send him with the people his own size it's saying by height yes so why are we trying to create a new interpretation because I also he might want to play with his friends Fair the reason I worry about this and the reason I'm being strict about it is because if you're like in an amusement park and there's these signs about height because of Safety and Security of the seat belts and locking me I get it I can't ride half those rides I'm too short to ride half the rides I can't either because of my fear why are you laughing at me sorry you made it sound like you can't for like an accessible reason that is an accessible reason no it's a mental health reason that's accessible okay fine can we have some cookies thank you so much I'm living in an average sized world it's not going to adapt to me I have to figure out how to adapt to the world world how about these look come here why don't we do these my grocery store in New York City refers to me as the climber at one point they were like you have to stop climbing and I was like okay then you either need to have step stools that are available to me or have someone who is available to reach the things down because in New York we build up and so I can't reach 70% of the things I need at a grocery store so what did they say too they told me they would have someone help me and I still climb and the other one's big because I was just born small why you do the same because we were both born small I love that about children that they're not afraid they're just being genuine I think that's the most authentic and genuine way to go about it I agree kids have questions because they're learning about the world and if we shush a kid when they have questions were're teaching them to feel shame in the presence of disability so while not everyone is comfortable explaining to a kid maybe why they're little or why they twitch or why they use a wheelchair um for people who are it's great cuz we're giving kids information and kids I think are inclusive when they get it whenever I'm more honest about what I don't know and what I can learn the more engagement I get I wish more doctors did that I wish more doctors like I don't actually know a lot about tourettes can you tell me bam if you put me in a room with 10,000 people who are 4' 6 and a half and have a whole lot of Tourette Syndrome every single one of us would have a totally different story it'd be cool to build one sometime in our yard or something that would be a place on totally equal grounds like just designed it so he doesn't know it's any different but he could climb up as fast as the other kids or whatever you know I mean you mean for you to build it yeah wow disrespectful laugh I love that like yeah this shows about a family of little people but it's also just about like a family and they are they talk smack that was like a sick burn the challenge of building this play set is I have to make things spaced a little bit closer together for Jack but I also want to space it in a way that every other kid in the world can use it too and it's not exclusively for him great example of Universal Design Universal Design is this idea that as we create anything a building a community a structure a phone a a tool we create it with the goal of as many people as possible being able to use it as the at the fullest extent possible okay so give me an example of that besides this when you go to open a door and there's a button and the door opens automatically that was initially designed for people who use wheelchairs but think about someone carrying groceries think about someone carrying kids think about someone who maybe doesn't have use of their hands or arms you do something for one or two and it's often beneficial for so many more I was born and raised in Annapolis I have never really left I stay here because no one sees me as a little person anymore Michelle describe the H I just heard that's it's just an interesting way to I think I'm trying to figure out like the best way to say this I think it's okay to see disability she is of short stature she's a little person I think what she probably means or I'm never going to put in her mouth don't judge her don't treat her differently yeah that's what I think prob like I think I don't I actually don't love it when someone is like when I'm with you Pam I don't see tourettes anymore I bark like yes you do I take advantage of that when I'm with you yes some average SI people think that little people can't work out and that's a total myth dude you work out harder than me except when I'm boxing training for professional fight I'm doing a lot more but otherwise your Baseline of working out is insane thank you I love working out and the gym is made for men of average he the elliptical I was told I'm too short to use I'm too short to use any of the bikes the things that you pull down I can't even reach it as a little person I'm really lucky that I don't have any physical complications that cause me not to be able to do what I physically like want to do those with acondroplasia have higher rates of Osteo arthritis so they can have a lot of joint pain and it could be very painful also those with a hrop plasia especially kids have higher rates of um frequent middle ear infections uh early development of sleep apnea huh there's so there's things you have to what we call a medicine is give anticipatory guidance that's interesting I've had a ton of ear infections and no one ever told me it could be connected to something else mhm see if I was your doctor and you were my patient okay I'll just cut yours okay no oh my God I love he's going for the chees a man of my heart we going to start eating L maybe tomorrow since we're eating pizza tonight the Story of My Life maybe tomorrow I really want the kids to have better eating habits because as little people if you're overweight it's more pressure on your knees and your joints and your back you know what point we never made clear medically about this if you're born with a contl there's no other medical conditions that you're diagnosed with you still have a normal life expectancy oh that's good to know Michelle's taking a cooking class the girls are taking dance maybe kind kind of realized that there's something I wanted to do for a long time what do you guess that he's going to do what I hope it is is like a magic class I was looking up skydiving mhm oh I kind of signed myself up you going to go skydiving there we go oh oh right there see look his parachute opened I'm so relieved Dan's parachute opened that was my biggest I guess that is the thing that you want there's your little boys here hey Jack my dad to do anything don't do you know that Pam roasts me literally all the time she actually roasted my entire Instagram picture catalog click here to check that out as always stay happy and healthy and fabulous you said nuggy last night I know I switch it up [Music] okay