Michaela Hollywood MBE
@KylaHollywood
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Deputy CEO @PathfindersNMA - Disability rights activist. 2015 Point of Light & BBC 100 Women. 2019 Emerging Leader. Views are all my own. She/Her
County Down
Joined November 2009
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Pinned Tweet
The secret is out! I am recognised in the Kings Birthday Honours List.
I honestly don’t think I have the words to describe the feeling of getting the letter to say you’re worthy of this kind of recognition.
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@Paul_Doherty__
Need to add those at high risk - people with underlying conditions can be and are young too.
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Today I turned 33!
I know people have a spectrum of feelings on birthdays. And I don’t believe there’s a wrong answer to that.
But when you live like I do they have extra special meaning.
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Hey
@TomFletcher
(and the whole team) - from me as a disabled person, thank you. Thank you for being inclusive, thank you for using inclusive language, and thank you for making this about being human. Proud to have such an amazing ally. Thank you doesn’t begin to cover it.
Thank you so much for all the lovely messages about this video
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It’s been a long time coming but today…
I GOT HOME!
I’m on azithromycin for the foreseeable future as we try to help my lungs heal. Everything else we try to keep as similar as possible as I work on a full recovery and resilience.
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Tomorrow, the Northern Ireland Assembly will convene and elect a Speaker and Executive Ministers. This will mark the restoration of Government in Northern Ireland. It’s been a long time coming.
But it will also mark the retirement of Speaker
@AlexMaskeySF
. A thread.
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Dear
#MollyMae
- how long does it take you to use the bathroom?
At least 2 of my 24 hours a day are spent hoisting to the bathroom.
Our toilet breaks aren’t the same. No matter how hard I work I’ll always need hoisted and a seamstress to fix my clothes so toileting happens.
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Great news that Will Smith has apologised to Chris Rock.
Now where is Chris Rock’s apology to Jada Pinkett Smith, all those living with autoimmune disorders like alopecia, and maybe a donation to a charity supporting people living with it?
Two men were wrong. Not just one.
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What an unbelievable week I have had.
Last Sunday I spent the day at Busted in Belfast. It was seeing McFly at their first gig in Belfast that started my journey to activism - which all started from wanting to be able to choose my seats at concerts!
A thread!
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Hello everyone. Just proving I am very much fighting. It’s a big fight and my days are cram packed with treatment between 9am - 8pm as we are giving me a whopping 3 physio sessions a day! So this time of evening is spent not coughing where possible. Easier said than done.
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HOME! Still sick but I am home.
Today is Day 20 and there’s still some infection to clear. But everything is so much better and trending better. My CRP today was 108, which is much higher than even my consultant expected.
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Today, I turn a leaf to a new decade as I turn 30! My lovely PAs clubbed together to get me flowers, and another PA got her friend to do this drawing of me! PAs are more than what the government says they are. They’re friends for life too.
#HollywoodFamilyLockdown
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This is the face of a fully vaccinated shielder.
After 48 hours in bed feeling like an antibody factory I have managed finally to get out of bed after 3 failed attempts.
PJs and comfort clothes still a must but it’s nice to see the living room. Even if I look like Casper ha!
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New cinema The Avenue opening in Belfast. I am a disabled cinephile. I check their website for accessibility. Not a mention on main navigation.
Where is it? Where is the accessibility? Why is it not front and centre like the rest of the experience?
I went for a rummage.
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It has come to my attention that the name of a bus stop in Belfast is a political priority at the moment. Can the next political priority be getting disabled people true inclusion on our public transport network? Rosa wanted to pick her seat on the bus. I just want to get on.
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I'm not vulnerable because I'm a disabled woman, I'm made to be vulnerable by a lack of inclusion. My vulnerability is not inherent. It’s a social construct.
This year we all need to
#ChooseToChallenge
ableism & pledge to call it out. Be anti-ableist.
#NotVulnerableIWD
#IWD2021
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My phone is ringing off the hook. Thank you ALL for such kind words. I will respond. Today has been brilliant for my soul & gives me renewed vigour and strength that we are moving forward.
For right now though, here’s a little suggestion on what you can do for
#IDPWD2021
#IDPD
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We use subtitles in this house a lot. This one was quite unfortunate for
#Strictly
- but the best laugh.
#SubtitleLaughs
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I passed my driving test with the reported toughest driving examiner in Northern Ireland on my 1st go with 3 minors.
I posted a video of my lessons on TikTok in response to one about deaf people not driving because it’s “not safe”.
Now I’ve got this
#EverydayAbleism
#Ableism
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I'm hugely honoured to have been included among 100 of the worlds most inspirational women of 2015 by the BBC!
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I can’t even deal with this.
Disabled lives are worth living.
Disabled lives are worth saving.
Disabled lives contribute positively to the economy.
Disabled lives contribute positively to society.
Our deaths do not mean any less or more than other peoples deaths.
People think I am exaggerating when I say that eugenics has been rampant throughout the pandemic. 60% of the UK's Covid deaths have been disabled people, and both the press and the government justify those deaths by talking about 'underlying health conditions.'
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I’m over the moon & honoured to be on this list with so many incredible people!
Tonight was my first evening out & I am so glad that it was this. Celebrating the best of our wee place.
Great to finally meet so many people I’ve known for so long.
Advocacy doesn’t stop here.
We're delighted to unveil our 35 under 35 list comprised of 35 remarkable individuals from across Northern Ireland who have made a difference in their own unique way
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If there’s one thing I want the world to know during
#DisabilityPride
it is this:
Wheelchairs and all mobility aids are good things.
Stop seeing them as bad or a symbol of failure.
They’re a symbol of freedom.
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I’ve had a busy day marking my 34th birthday and another full trip around the sun.
Birthdays are rare and I feel very lucky to have been at home for this one. 33 was difficult but still full of beautiful lessons and moments. And I know 34 will be full of wonderful beauty too.
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If you do only one thing today. Watch this.
🗣 “This is a story of triumph, this is NOT a story of defeat!”
If you watch one thing today, make sure it’s this
@EllieRobinsonGB
interview.
#Tokyo2020
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Today at 16:30 my wonderful Charlie went to sleep.
I love him so much. I’m so proud of him. His going to heaven will never change that he’s my soul pup and I am honoured to be his chosen human.
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Happy Disability Pride Month!
This is the month where, to their own loss, you will not hear about the diverse, brilliant people in the disabled community. Businesses will not display the Disability Pride colours or talk about the role we have to play in society.
#DisabilityPride
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Today has definitely been my best day so far. We got me to 98% oxygen saturation at last. My infection markers were 50 yesterday, down to 26 today. We are on the right road.
I also had a lovely visit from my cousin who brought me a reindeer mascot & my friend Margaret.
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The *actual* Tower of London has installed a Changing Places toilet.
What was your excuse again? Oh yeah that’s right, there isn’t any!
Accessibility is a win for all of society and Changing Places is part of that. Economic recovery will depend on disabled spending power.
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I’m kind of on my way back!!
My CRP today on the finger prick machine was less than 5 which is the first time it’s been normal in about 3 weeks.
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It’s been a rough 6 months but today I got news that I’ve made the
@ShawTrust
#DisabilityPower100
shortlist for the first time!
Disability advocacy never stops and I’ve been quieter here while I’m working on something big and urgent for disabled people in Northern Ireland.
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Northern Ireland will miss having a speaker so focused on representing authentic voices from all corners of our wee place.
While I very much cannot speak Gaelic, for
@AlexMaskeySF
I’ll give it a good go:
Go raibh maith agat, Alex.
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One more this evening, but this time I’m saying it to camera.
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I’ve been following
@adamlambert
since his first audition on American idol and my word… he still blows me over with his pure talent. Even after all this time.
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It has been 24 hours of trying as hard as we can to find balance.
Last night for the first time since I was a child we had to get the night physio round. At 4am. Because I was drowning in secretions.
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I’m speaking out from my hospital bed about Nicolas Hamilton’s comments and the lack of challenging from the
@loosewomen
pannelists in response.
My life is not bleak.
Video description next tweet.
#LooseWomen
#NicolasHamilton
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Tune in to BBC News at 6pm where I’ll be talking about disabled people and our reliance on life saving equipment - and how power cuts during storms threaten our safety!
#StormIsha
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This is the face of someone who has received the first of 2 COVID vaccinations.
I had a bit of a rough ride with side effects, all of which were stemming from a good immune response. Fevers, pain and nausea for 48 hours and since then just pain.
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We are ready to celebrate our
#HealthCareHeroes
at
@NIHSCAwards
this evening!
My first big thing since 2020 and I get to celebrate the very people who have got me to today.
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The Martin McGuinness I was lucky to know has left us all a profound message.
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It’s been a while. Hello, world.
Truth is I have felt so unwell since Christmas that taking pictures of any kind of me has been right at the bottom of my list of things to do.
Today we confirmed that my body finally seems to be stabilising.
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Went to do my motor assessments as part of my agreement to access Risdiplam today. Without Risdiplam I’d have been in big trouble.
Most of my scores stayed the same. Which is miraculous. My lung function increased. And…
I finally tore a sheet of paper!
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So today I did this... never in a zillion years did I think I would get to take to the red dot. And to do it in 2020 is an even bigger dream. Thank you
@TEDxCookstown
&
@Clairelohanlon
for letting me share my big idea.
#TEDxCookstown
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I’ve been utterly bowled over by the support I’ve had this week.
From messages of congratulations over the internet to cards from old nurses, and the ladies at bingo. I even got these flowers from my sisters work colleagues, and a letter from the Lord-Lieutenant of County Down!
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Today is 27 years since Martina went to Heaven.
Martina was 14. I was 6. Losing a sister you share something as big as a dare condition with so young is still indescribable. She was my big sister who taught me that disability isn’t negative.
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So, today was the first day of a new chapter for me at Disability Action. I now work as a Community Navigator in the ONSIDE Programme.
Really excited to be joining the team!
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By this evening I might have been frazzled. But I’m not one to filter out the frazzle.
We got my PICC line placed today and started IV antibiotics this afternoon. I’m just pleased we have therapy started that will hopefully make me feel so much better and get me healthy.
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Been struggling with a news story today. Not sharing as it’s extremely damaging.
For those who have seen it... we deserve to live. We are not less than. We are worthy.
Disabled people are not expendable.
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Something I’ve been mulling over is disabled people and where we belong.
But after a LOT of mulling it over I have come to a simple conclusion.
Disabled people belong wherever they want to be.
Maybe radical. But true.
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I’ve been quite up and down since Christmas. But today we went out to celebrate my mum and dads incredible 50th wedding anniversary.
So here’s a picture to celebrate feeling human and okay today - the little wins, win.
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Today I turned 31. Not 7 (I forgot to add candles to our order!) but every year with SMA is a blessing.
VD: Michaela a woman using wheelchair is sung happy birthday with a chocolate cake in front of her with a red number 7 candle on it. Afterwards she talks to camera.
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I’ve been a little quiet. I’ve had 10 days of meropenem and am still taking fevers. We are now pushing ahead to finish the 14 day course and then we are going to monitor me for a few days.
I’m better than I was. There’s no doubt in that. But I’m still unwell and need treated.
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To people talking about mask wearing being a choice.
My choice today is continue coughing up blood and taking 10 nebulisers a day.
I am holding on to staying home by the skin of my teeth. This reality was not my choice.
Masks protect people like me from situations like this.
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Today is the International Day of Persons with Disabilities.
A whole day dedicated to my community.
Being disabled right now is tough. Our rights, lives and liberties are under threat through the economic crisis.
#IDPWD
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We are into the last 24 hours of meropenem & we are seeing reassuring signs!
My body temperature is just starting to be a bit more settled and not spiking, my secretions are turning white instead of green even though we still have some blood & I’m not quite as chesty generally.
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Today I was brave. Going out in the midst of all this is tough. Especially as a shielder. My hair is cut (literally taping my mask to my face because I have no ears) and I went to the cinema - getting the whole screen to myself. Tired now but mandatory masks made me feel safer.
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Happy International Wheelchair Day! We are still tweaking my new seating to get it right. But my wheelchair represents freedom and liberty.
#InternationalWheelchairDay
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Today is Changing Places Awareness Day! Let’s turn it into a day of action. 🧵
Changing Places toilets include more space, a hoist and a bench so that disabled people who need assistance from others can go to the toilet safely and with dignity.
#DisabilityPride
#ChangingPlaces
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The people in this picture are all incredible.
@Susie_Rodgers
@AbiaAkram
@rossalliance
@judithheumann
and the others I can’t find Twitter handles for (please @ yourselves!) and I’m so delighted to be connecting with everyone!!
We really should do this more often.
#HarkinBelfast
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I have been in hospital since Monday. Going to hospital is tough in this climate.
We aren’t sold on my diagnosis as yet, and I have a lot of work to do to get better yet.
Being in hospital as a disabled person is also very tough.
I have the best family around me in here.
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Here’s one for Rishi.
I’m in hospital with another 10 days or so to go at a minimum being treated for a chest infection.
I’m able to work SOME of the time in here. So I am doing so when I’m well enough.
We don’t have a fit note problem. We have a supporting people problem.
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This picture was taken when I was stable in resus and awaiting admission. I’ve come so far the last 32 hours or so. I’m still bringing up secretions, but they’re no longer full of infection.
My white blood cells are back down to 8 which is totally normal.
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I had a bit of a recovery time from the second dose of Pfizer vaccine - something true for me for all vaccines.
However I’m so glad to be vaccinated. Shielding will continue. We’re on Day 408. Been able to enjoy the sun & warmth the last few days.
Don’t forget people like me.
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If I can achieve 0.001% of what
@judithheumann
did in her incredible life of service, I’ll have done what I can only dream of.
Our community has lost someone I don’t even have words for. A giant. A hero. A relentless force for what was right.
Thank you, Judy. Rest in Power.
Judy Heumann dedicated her life to the fight for civil rights—starting as a young organizer at Camp Jened and later helping lead the disability rights movement. Michelle and I were fortunate to work with Judy over the years, and are thinking of her family and friends.
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@GinnyAndT
I’ve felt so conflicted. BiPAP isn’t the same as total/invasive/tracheostomy ventilation but it gives me stamina, life and a decent nights sleep. Perpetuating fear of it also perpetuates fear of us as humans. But it’s so difficult... we need people to realise masks aren’t evil.
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Today is a day REALLY worth celebrating. It’s
#InternationalWheelchairDay
- a day all about me and my friends.
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It’s taken a lot of work to get me here. I couldn’t eat ANYTHING yesterday and didn’t even manage a nutrition shake.
But today the tides turned enough for Christmas dinner and my heart is happy.
Merry Christmas everyone!
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I was honoured to have met HRH Prince Philip, Duke of Edinburgh in the summer of 2016. He made a wonderful remark about the height of my wheelchair & how much he loved that I was of equal height.
My thoughts are with all who knew, loved and now mourn him. May he Rest in Peace.
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@DrFrancesRyan
And finally - I can’t press the buttons on most pin machines. Easy press buttons needed! I have to tell people my pin in very public places.
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This is my
#ShieldingSelfie
. We should not have been left to wait an extra 24 hours than everyone else to find out whether we are officially back in shielding.
#coronavirus
#wearestillshielding
#remembertheshielders
#coronavirusuk
#covid19UK
#wearetheshielders
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Back on the ward with access! Surgeon used the words “very challenging” followed by “that was actually okay because to be honest with you I thought it was going to be a complete and utter nightmare”.
So this is to be protected. Well protected. Now we wait on the plans to treat!
The gown is here. Going down to interventional radiology this morning to get this PICC line in. Fingers crossed for a smooth insertion!
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Honoured tonight to have received recognition from
@nmdcouncil
for my campaigning and fundraising.
It’s almost 12 years since I started on this path, but it is definitely a path I was born to tread. Having
@MD_Trailblazers
is one of the best things I’ve ever been able to do.
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We got our first isolation food box from the NI government this morning. So hugely appreciated and variety of food means there’s stuff I can swallow! Got it right NI!
#NIDisabledLeaders
#HighRiskCovid19
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I can’t sleep and breathe without my ventilator. If I sleep without my ventilator I stop breathing.
Don’t think a candle will give me a 13 inspiration pressure and 4 expiration pressure.
Brits should stock up on torches and candles to prepare for power cuts, Oliver Dowden says
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Tomorrow, I take to the dot at TEDx Downpatrick.
I’m really excited. Because this time I’m doing something that nobody else will do. Something which will, I hope, make an impact which will result in lasting change on a personal level for those there.
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I am slightly frazzled this evening but I’m pleased to finally have a PICC line in. We have some possibly complex decisions ahead as doxy isn’t working for me and we are a little limited with antibiotic choice.
But having IV access relieves that pressure so much.
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I have lived my entire life as a disabled woman. I can’t remove that from who I am without destructing everything I am.
We hear so often about not letting disability define us. That isn’t the issue.
Disability is intertwined with every single cell in my body.
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Happy New Year!
I am currently really struggling with pain in my lungs, especially on my right side. The going theory is that this is coming from the sheer amount of coughing I had to do and the physio required to clear secretions for the last 4 weeks. Dr to
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I understand if you don’t want to adhere to
#PlanB
or any other restrictions our Governments have set.
Don’t do it for them. Do it for me, & people like me who other than very carefully selected outings have been heavily restricted for 636 days for our safety.
#StillShielding
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@joannajarjue
@adilray
I’ve been wearing a mask from clock change to clock change (October to March) to avoid winter viruses. They work in my experience and the experiences of many many of my shielder friends.
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As a disabled person I’m really concerned over this choice of language. You can remove a *mask* to eat whatever takes your fancy. It is not a muzzle. If any of my disabled friends see this I sincerely hope they are okay. Because many of us have relied on masks for a long time.
Support local business. You can’t eat🍦when you’re muzzled!
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On Day 2 of
#DisabilityPride
month and I want to talk about something we just don’t hear enough about.
Disabled joy.
I’ve struggled to find the joy in the last few days. So I went waaaaaay back in my archives to find these two gems, taken on the same night.
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We are ready to go! Watch live on
This is thought to be the first ever
#DisabilityParliament
in the world so get involved online!
Glad to be in the same corner as
@castleDD
@MyWayAccess
#IDPD
#IDPD2021
#IDPWD21
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Thanks to
@StephenNolan
@BBCNolan
for covering
#ChangingPlaces
toilets this morning. We know there’s a lot of work to do but huge strides are being made to ensure toilet access for all.
Here’s the brand new toilet I mentioned in
@TitanicBelfast
! Toilet inclusion is possible.
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Good evening! I have had a much better day today.
Yesterday my white blood cells had spiked as did my CRP which had been falling. When you’re on multiple antibiotics this is never an expected response - especially not when it’s a change in pattern. So it caused mild panic.
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So much negative spin on
@LewisCapaldi
at Glastonbury.
A man, with obvious physical disability & mental health issues was supported. Enabled to do what he loves, differently.
There’s only positive things in there for all of humanity.
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I got into the hot tub today. Range of movement in left leg was huge. Got to build arms up a bit too. All that and we forgot to get a picture - so this is an oldie!! But hydrotherapy is amazing and I’m lucky to have it for when I’ve got the energy for it.
#HollywoodFamilyLockdown
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On Thursday I had my first big event out since the pandemic, and I couldn’t be more delighted that it was in honour of the Health and Social Care Heroes in Northern Ireland!
A thread. Please read on!
#NIHSCA2022
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A whole year ago today I took my first dose of Risdiplam.
This year has been a bit of a whirlwind. But I’m thankful every single day for Risdiplam and what it’s continuing to give me.
Better lung function. More stamina. Muscle strength multiplying.
Thank you Science.
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Rob Burrows has done incredible, positive things for everyone living with ALS - and any muscle weakening condition.
As someone living with a diagnosis so similar on a different timeline, every loss hits. May he now rest peacefully. Thank you for all you’ve done. We won’t stop.
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Window view for the next few days. Readmitted yesterday after relapsing AGAIN really annoyingly. Doctors have all heard what I can feel in my lung but my immune system doesn’t appear to be fighting back just yet.
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On
#MothersDay
here’s a little one of my mum and me.
She is always by our sides as we navigate life. And our live can be pretty wild sometimes.
One to never give up, I know where we get our determination from.
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2 years ago today I accomplished something I never thought possible. I passed my driving test.
My van has hand toggles for steering, breaking and accelerating. Buttons for everything else, including indicators. And mirrors for looking right.
#HollywoodFamilyLockdown
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It finally got me this morning. My symptoms are probably best described as reasonable.
I have a fever & my lungs are burny, which would be my usual viral responses.
I get antivirals tomorrow and I am taking things easy at the moment.
Battle stations are on and I will win!
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International Women’s Day is upon us!
As a disabled woman, I sit on an intersection that is all too important. And as one of four female siblings, I’ve always been surrounded by strong, relentless women.
#InternationalWomensDay
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