Gone are the dark clouds that had me blind.
Johnny Nash

The incredibly thorough international collaboration, originally started by a German Neurologist and Rehab Consultant, followed up by U.K.-based communications specialists, by spec manufacturers, and finally delivered by Ireland’s top opticians, practically gave Pádraig back his eyesight. He can now see the world around him again with open eyes. With the new glasses, he can do that over longer periods of time. They are also much easier to put on than the previous pair he had.

If you want to find out more about Pádraig’s glasses, the amazing people who put us in touch with the best manufacturers and opticians you could possible find, have a look at this video.

There are brighter day coming, not just with yesterday’s Lá Fhéile Bríde and the beginning of the Celtic Spring time bringing longer stretches in the evening.

If there are obstacles, and there will be plenty of them, at least can them see all in his way.
Gone are the dark clouds that had him blind.

Oh Jerry, don’t let’s ask for the  moon; we have the stars.
Bette Davies in: Now Voyager

There is this scene in A Complete Unknown when Bob simultaneously lights two cigarettes and shares one with his girlfriend Sylvie Russo (who, in real life, was called Suze Rotolo). Or did she lit the two cigarettes and shared one with Bob? In any case, the scene brought back long forgotten memories. Like many older ex-smokers this is something I remember having done more than once. The scene also includes a quote from Now Voyager, in which Bette Davies invites Paul Henreid to share the stars, rather than being bothered too much about the moon. There are those who consider this to be one of the most romantic and sob inducing cinema moments of all times.

How many times can a man turn his head and pretend that he just doesn’t see?

What you wish for doesn’t have to be what is “in your face”, the nearest, the brightest, and the biggest.

Perhaps it is those far-away tiny little sparkling mysterious stars way beyond that big auld moon that hold your dreams and hopes.

How many ears must one man have before he can hear people cry?

There have been no massive in-your-face improvements in Pádraig’s condition. But there are “little” star moments when they shine extra-bright, bringing incredible joy and hope to us all. When it seems that some of our dreams are coming true.

Last week, we had two of those.

The first one was when Pádraig did some fantastic exercise in An Saol. He was half upright on a tilt table and the physio he was working with asked him to allow himself to slide down by lifting up his knees. That worked fine. Hard, but not too special and not new. But when I expected the physio to ask him to push himself up again, the physio asked him to come down a bit more. And then: to hold himself in that position. Now this was hard and very special. Pádraig managed this pretty complex exercise to perfection. And on 3-2-1, he pushed himself back up completely, without hesitation, when he was asked.

There are a dozen things happening here that had not been part of the plan of the Cape Cod-based consultant who predicted an “intolerable life” for Pádraig following his accident. Yes, the one who, in open daylight and full knowledge of his colleges, repeatedly recommended organ donation to us. They even happened to have an organ donation team waiting for us in the hospital canteen.

Would he now have second thoughts if he saw Pádraig?

How many deaths will it take ’til he knows that too many people have died? 

Pádraig didn’t stop there.

What we saw next brought untold happiness to our hearts and tears to my eyes. Despite it being the most normal, every-day thing that each of us do all the time. Or, maybe, because it was (or should be) such an every-day thing.

We had bought a packet of “Luftis” in Germany. Just corn, oil, and salt – they’re large, like chips, very crisp, light, easy to grip and get into your mouth. They don’t taste spectacularly well but provide you with an immense amount of satisfaction. Especially if you manage to pick them up and stick them into your mouth all by yourself, without any help. As Pádraig did last week.

Let’s stop turning our heads pretending we just didn’t see. We can hear people crying if we open our ears. Too many people have died. We know. Enough is enough.

There is no impossible. Sometimes the answer is not blowin’ in the wind. Sometimes you don’t have to wish for the moon because you’ve got the stars. (Even if you are in the gutter.)

Ná habair é déan é
Anon

We’ve had had this fridge magnet on our oven (!) for nearly two decades and only yesterday did I figure out what it said.

It’s a slogan used by several campaigns. On one website it was labelled as “the rallying call for social, cultural and political change”.

I got a sweatshirt as a present recently saying –

– and I liked the idea of living without limits, of standing tall in the wind, of facing the waves of adversity, with no horizon too distant, no ocean too deep, daring to go where others can’t follow.

Until I came across a quote by Confucius who said, ‘To go beyond is as wrong as to fall short’.

So, yes: pushing the boundaries is good. Going where others can’t follow, not. Neither is to fall short. That is if you want to affect change.

We need social, cultural, and political change to make this world a better place. But we can only do this if we bring others with us. If we go places where others can follow.

And it is not sufficient to talk about it. We have to do it.

On Wednesday of last week, a 162-page Programme for Government of Ireland over the coming five years was published.

According to Christina Finn, writing in The Journal on Thursday, the word ‘continue’ is in the document 249 times, ‘explore’ is in there 34 times, ‘review’ is mentioned 126 times, ‘examine’ is contained in the document 86 times while ‘consider’ is mentioned 56 and ‘assess’ 27 times. 

Ná habair é déan é.

Finally, if you have a few minutes, this article, published in the New York Times last week, is worth reading: The Terrifying Realization That an Unresponsive Patient Is Still in There by Daniela J. Lamas, a pulmonary and critical care physician at Brigham and Women’s Hospital in Boston. She writes that

A provocative large study published last year in The New England Journal of Medicine suggests that at least one-fourth of people who appear unresponsive actually are conscious enough to understand language. As a doctor who sometimes sees patients like this, these findings are, in a word, terrifying.

Studies like this raise the possibility that there are tens of thousands of men and women locked inside their minds, isolated to a degree I cannot even imagine. They are voiceless and largely invisible, with some of them being cared for in nursing facilities.

Now that we know this, how can we ignore this horror?

Now that the An Saol Foundation has shown what can be done, how can the State not sufficiently support it?

We don’t have to go beyond. Just act on what we know. This horror has to end.

Ná habair é déan é.

He not busy being born is busy dying.
It’s Alright Ma (I’m Only Bleeding), Bob Dylan

Last Thursday, Pádraig watched with us some of President Carter’s funeral service in the Washington National Cathedral. Carter was also known as the Rock & Roll President with a documentary of that name released in 2020. In its opening scene, it shows the President delivering his inaugural speech in 1977, quoting this line from the 1965 Dylan song It’s Alright Ma (I’m Only Bleeding).

Dylan is all around us these days. Next Friday, A Complete Unknown will be released in Ireland, with Timothée Chalamet as Bob Dylan. The man who wrote Blowin’ In The Wind in ten minutes, ‘probably’ he says, gave a rare 60-minute interview to Ed Bradley just over 20 years ago in which he says that he doesn’t know how he wrote those songs, that they were almost magically written.

Darkness at the break of noon
Shadows even the silver spoon
The handmade blade, the child’s balloon
Eclipses both the sun and moon
To understand you know too soon
There is no sense in trying

You can’t write this stuff. It comes to you. It’s Alright Ma.

Check out some of the other incredible lines from the song.

But though the masters make the rules
For the wise men and the fools
I got nothing, Ma, to live up to

But even the president of the United States
Sometimes must have to stand naked

Everything from toy guns that spark to flesh-colored Christs that glow in the dark, it’s easy to see without looking too far that not much is really sacred.

Money doesn’t talk, it swears.

Propaganda, all is phony.

Advertising signs they con you into thinking you’re the one.

And if my thought-dreams could be seen
They’d probably put my head in a guillotine
But it’s alright, Ma, it’s life and life only

In 1980, Dylan said, “I don’t think I could sit down now and write ‘It’s Alright, Ma’ again. I wouldn’t even know where to begin, but I can still sing it.”

I don’t think anybody could have or could now come up with those lyrics. And, apart from Dylan himself, there are only few who can sing it, perhaps Roger McGuinn is one of them for the 1969 movie Easy Rider.

The song is 60 years old, almost to the day, recorded on 15 January 1965.

It is as mind-blowing, as current, and as important as ever.

This one, Subterranean Homesick Blues, is equally as old and as current, literally out of this world, and reflects our Zeitgeist as it did when it was recorded on 14 January 1965, almost 60 years ago to this day, just one day before It’s Alright, Ma.

Johnny’s in the basement, mixin’ up the medicine
I’m on the pavement, thinkin’ about the government
The man in a trench coat, badge out, laid off
Says he’s got a bad cough, wants to get it paid off
Look out, kid, it’s somethin’ you did
God knows when, but you’re doin’ it again
You better duck down the alleyway, looking for a new friend
The man in the coon-skin cap in a pig pen
Wants 11 dollar bills – you only got 10

Dylan’s genius does not only show in his lyrics, but also in his delivery of these lyrics, both in audio and in video.

Most people know that Boris Johnson’s ad in 2019 was a recreation of the famous “Love Actually” scene from 2003 in which Mark finally expresses his hidden love for Juliet. Not so many people know that Bob Dylan had the original idea for the card board delivery of important messages for his official video for Subterranean Homesick Blues in 1965, almost 40 years earlier.

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The recurrent themes in the eulogies for Jimmy Carter were that he had “character”, that he had faith, and that he would always tell the truth. That he stood for human rights, for what was right and against what was wrong.

He was the Rock & Roll president who quoted Dylan in his inaugural speech, He not busy being born is busy dying. Steven King references this in the Shawshank Redemption, “get busy living or get busy dying.” 

We are living our lives, with different abilities, to the fullest, often against the odds, against medical wisdom, struggling against a system that would like to see some of us, young, wasting the rest of our lives in a nursing home.

But we want to be busy living. Not busy dying, not merely existing, slowly and painfully rotting away.

Do you know if there is anything we could do to get more Rock & Roll presidents, T.D.s, Ministers, public servants, health officials?

 “One feels free in relationships of love and friendship. It is not the absence of ties, but ties themselves which set us free. Freedom is a word which pertains to relations par excellence. Without hold there is no freedom.”
Byung-Chul Han

The German magazine DER SPIEGEL called him the philosopher of bad mood. Now they included him in the list of people who give us hope.

Apparently, Han is one of the most important and most widely read philosophers of our time.

I had to look him up. You can listen to Han’s writing on Spotify or check out a short interview with him here (in German with English subtitles). I started to listen to The Agony of Eros. It’s short, pretty dense, and so interesting.

To me, Han’s ideas clarified, explained, and named stuff I had noticed around me for some time. Noticed in myself, my behaviour, my feelings, my thinking. He put the finger on ‘it’.

In a way, what he is saying is both old-fashioned and revolutionary. We have to stop getting absorbed by ourselves and allow ourselves to be absorbed by another – allow ‘Eros’ to do its work.

He returns to a world I once knew, where we took care of each other, where my focus was not on me, but on the person I cared for, the person I loved. Not desperately tried to be loved, but loved. Where we were enriched by the one we loved, instead of trying to make them like ourselves. Where, in a way, we were free because we did not enslave ourselves to the gods of material wealth, external beauty, and the number of Facebook friends or YouTube followers.

“One feels free in relationships of love and friendship. It is not the absence of ties, but ties themselves which set us free. Freedom is a word which pertains to relations par excellence. Without hold there is no freedom.”

It’s revolutionary because it couldn’t be a more radical break from the values held by large parts of our Western societies where we often commit ourselves to success, busy-ness, and transaction-based relationships. Where many get depressed if they do not succeed – when they so easily could (so they are told) if they only tried harder. Where there is no room for the reality of pain, hurt, failure, disappointment and the like. Where our commitment is primarily to ourselves and our efforts are primarily directed at the satisfaction of our own desires.

Everybody tells us that everything is up for grabs and transaction-based. You can buy youth, health, friendships, and love.

Han brings us back to 1964 and the realisation that money can’t buy you love.

Tell me that you want the kind of things that money just can’t buy
I don’t care too much for money
Money can’t buy me love

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Finally, I want to share this song with you. Ideally, listen to it, full blast, on a sunny day, driving a fast cabrio down the Pacific coast on US Highway 1.

Just when you feel helpless
Nothing left to say
Love will find us, the past behind us
Then we’re on our way

Then we’re on our way.

… because there was no room for them in the inn.
Luke 2:7

It all began away in a manger, with no crib for a bed. That was the beginning. Since then, the world hasn’t been quite the same.

Pádraig went into town to see the manger on O’Connell Street, the ‘Portal‘ on Talbot Street, the Dublin Winter Lights installation at the GPO, Henry Street, and the lights on Dublin’s North Side. The vibrancy of the city, the magic of the lights in the darkness of the early winter evening, and the buzz on the streets was contagious.

Pádraig got the socks that everybody at Christmas is hoping for: retro colours and non-matching so that you will never have to sort them out after the wash. Another retro present was a turntable, one of those very basic ones like in the old days – but more than good enough to finally play the vinyls people had given him over the years, including Bell X1 and the new Paul Noonan venture HousePlants.

As in previous years, the highlight of this year’s concerts was Bell X1 just before Christmas who this time had selected The Helix as their venue, rather than the more open and perhaps louder Vicar Street. Pádraig agreed with his friends who accompanied him that it was the best ever Bell X1 concert they had attended. And that means something…

We believe in new beginnings, even if we have to start at the very bottom, under very basic conditions, because, currently, there is no room in the inn.

We hope for the lucky one, like the one that came in eighteen to one. I’ve got a feeling this year’s for me and you. But we can’t make it all alone.

So put your dreams with our own. Believe. That’s the beginning. And then – the world won’t ever be quite the same again.

One can never have enough socks,” said Dumbledore. “Another Christmas has come and gone and I didn’t get a single pair.”
J.K. Rowling, Harry Potter and the Sorcerer’s Stone

People insisted in giving him books.

Everybody has memories of Christmas. Many are nostalgic.

I am thinking so much these days of what was. Who was with us and isn’t anymore. How we were and ain’t anymore. What I felt and don’t anymore. How much I was expecting my presents, the tree appearing on Christmas Eve, the music, the light, the smells, the stillness, as if the world had come to a halt for that one night. There was no business, no shops, not even for batteries, no traffic. The annual, slightly awkward, visit to the relatives.

Then, there were a few Christmases in Hamburg when Pádraig was in hospital – one when we had great hopes, another when he was getting ready to be discharged and they were making arrangements to get him a permanent tracheostomy – which, thankfully, we were able to prevent.

For the last few years, it was Pádraig friends who made all the difference. The 80-year old woman in Connemara who provides the secret ingredient, Poitín, to the preparation of the unbelievably tasty mulled wine will most likely have no idea how much she contributes to this magic evening.

While the mulled wine that has become the signature dring of the evening, it is the company that makes it so unique.

Pádraig’s friends are a group of people the likes of whom I have never encountered anywhere else. They are incredibly warm, interesting, smart, helpful, and fun. While the thought has crossed my mind that I might see it that way because they are so young and energetic, I am sure it’s much more than that.

They know each other for close to two decades and they have been with Pádraig all the way from before to more than a decade after his accident. Some told me that it is him who has been bringing them together – from before and since his accident. So nothing has changed.

Yet, things have been changing for so many reasons. This year, for example, for the first time one of his friends brought their baby along. They are all settling down from what some described as having been pretty wild years being out and about.

Which is how life continues. From being carefree to taking responsibility, not just for yourself but also for others. Contributing. Planning. Inspiring.

Pádraig has been doing exactly this.

It is his inspirational outlook that lead to the establishment of the An Saol Foundation, the setting up of the An Saol Foundation Centre, and, now, the submission of the application for planning permission for Teach An Saol – The National Centre for Life and Living with a severe Acquired Brain Injury, at Shangan Road in Ballymun.

What a Christmas Present this is. For so many people. Made possible by those Pádraig inspired. Some of whom he knows and some he has never even met. Other clients of An Saol. Staff. Volunteers. Politicians, planners, engineers, architects, lawyers and many more.

The best presents are those you hope for so badly but are were never sure whether they will actually materialise.

Not sure whether Dumbledore will be lucky this year and get a pair of socks instead of the usual books.

I am, however, absolutely certain that we could not have done much better!

Nollaig Shona. Happy Christmas. Frohe Weihnachten. Feliz Navidad.

For the past 33 years, I have looked in the mirror every morning and asked myself: ‘If today were the last day of my life, would I want to do what I am about to do today?’ And whenever the answer has been ‘No’ for too many days in a row, I know I need to change something.
Steve Jobs

Steve was clever.

On this one, however, he might have missed the point.

Most people recognise when they need to change something.

Few people actually do change what they know they should.

In a bit more than two weeks’ time, millions of people will decide to eat better, get more sleep, spend more time with their families and friends, exercise regularly, and live their lives in a more sustainable way. Wear sunscreen. And not for the first time. They do it every year. And in most cases, their New Year’s resolutions won’t last.

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On the second Sunday of Advent, last Sunday, Pádraig went to our church’s annual Carrol Service. The church was packed with people all getting ready for Christmas, celebrating Advent – the time for hope, for preparation, and for new beginnings. It was a fantastic night with thoughtful prayers and poetry, a short organ concert, and beautiful singing by a soloist and two excellent choirs. Only when we checked out the programme did we realise that all proceeds from the night will go the Merchant’s Quay Project working with homeless and to the An Saol Foundation – which made the event even more rewarding and moving.

Early in the week, we went to see Pádraig’s absolutely fantastic new optician who is fitting his new glasses and who came up not just with a new way to keep his eyes open, but also with a frame, that could be used as an ordinary glasses frame as well as sunglasses with magnetic pop-on shades.

How cool is this?

Later in the week, Pádraig went back to some of his old haunts in Berlin and, of course, to the Christmas markets. We had decided to travel by public transport. So once we had arrived in Berlin’s new BER airport, we took a train towards our hotel. We only had to change once, Dr Google suggested.

What Dr Google did not know was that the lift on the platform in Bahnhof Friedrichstraße was broken.

Having consulted with Deutsche Bahn over the phone, the intercom, and with a real person who eventually turned up on the platform, we were told to wait for the next train, go to the next station and continue our journey from there.

Despite it being a cold and windy night, we decided not to take any more risks once we had managed to get off the platform at the next station. Instead we decided to follow Dr Google’s directions and walk the 30 minutes to our hotel. Well – we hit several stairways we had to circumvent and were sent down some muddy paths through a pitch dark Tiergarten.

Needless to say, we did not feel very welcome in Berlin.

We hoped for a better day. And we were rewarded.

We went to the Christmas markets around Alexanderplatz, to Europe’s biggest Department Store, the KaDeWe on Kurfürstendamm where Gucci invited us to “share love” (!), and to the Olympic Pool in the former East of the city where he had trained and competed during his transition year with Germany’s best. We did not stay in, but past the Berlin-version of the famous Waldorf Astoria. We saw the two flags on German’s conservative CDU headquarters pledging to stand with Ukraine and Israel.

The pool, with several 50m pools and a dedicated jump pool, had not changed and was as impressive as ever. The lift down to the pool, unfortunately, also was as small and ready for a deep clean as ever.

The visit that really moved me was to the German Resistance (!) Museum dedicated to those who had opposed Hitler and his helpers during the very dark hours of German history. It’s in the very place where Stauffenberg and those who supported him were shot following their attempt to kill Hitler on 20 July 1945.

Amongst the items exhibited is a letter signed by Albert Einstein, Käthe Kollwitz, and Heinrich Mann, urging the democratic parties on the left to unite against fascism as the only way to defeat it.

Another document, a sermon by Bishop von Galen, “Krankenmorde”, describes how the Nazis killed those with disabilities who could not be rehabilitated, ‘cured’, and who were considered to be a burden on society, the people and the state.

Chilling.

We have changed and we live in different times.

Pádraig has a fulfilled life. He wants and can travel. He can do what we all want to do: be amongst people and enjoy life and company.

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When I look in the mirror every morning I know, every day, what I want to do that day. I know I need to change something.

Demonstrate that life and living is possible even in difficult circumstances. Encourage people to give their best to support those who need their support because, on their own, they wouldn’t be able to survive. Because nobody is a burden. They ain’t heavy. They’re our brothers. And we’re strong. Strong enough to carry them, on a road from which there is no return. Everybody needs to know this.

If you share this message of hope and new beginnings, pass it on to your families and friends. Even, perhaps especially, to strangers.

Because that’s the change we need today.

And if we really want it. We need to be that change.

When I’m in my stride there’ll be no stoppin’ me.
Paul Noonan, No Stopping Me

One of Pádraig’s favourite bands is Bell X1 with lead singer Paul Noonan. Paul and Daithí started HousePlants, a great new group Pádraig is exploring. They literally are electrifying.

No Stopping Me starts slow, but when Paul hits his stride, there is no stopping him. It looks like a low quality amateur recording of a Cork concert which is probably why it captures the determination and energy of the song and the performer so well.

You say to be careful. No, don’t go all in. – My shirt wide open. Flapping like wings. Like wings behind me.

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Like most weeks, last week just flew by.

Pádraig went to see Foil, Arms, and Hog with one of his best friends. Doomdah!

It was a fantastic evening. The lads even came out for a picture and apparently were really chatty and friendly.

We had another fantastic evening at the Lord Mayor of Dublin’s home, the Mansion House, where the An Saol Foundation celebrated this year’s Adventfest. Rather than replicating the pictures from that evening here, check out the Gallery prepared by the incredible Isabella, an An Saol Foundation intern from Boston University and originally from El Paso. Yes, THE El Paso.

It was a great night, with food and drink provided by the Lord Mayor, and with music and poetry by famous Irish trad musician Maitiú Ó Casaide, the incredible Lighthouse Project singers from Finglas, journalist and poet Vincent Woods, and the unique Colm Ó Snodaigh of KILA fame.

As all the glamorous Bank of Ireland lads in their tuxedos and evening gowns were arriving and walking up the stairs to the grand entrance of the Mansion House, on a very cold and windy night, the tiny wheelchair lift beside the stairs broke – and nobody was able to fix it. The ushers blamed ‘a person’ who had pressed the wrong button and broke it.

We managed to carry some wheelchairs and their passengers up the stairs. The motorised chairs had to be brought up through a side entrance of the restaurant. There was nothing stoppin’ us once we were in our stride!

The scene was ready for national TV, the next news show, and Talk to Joe.

When I looked up the word, I read that a maverick describes a person who thinks independently. A maverick refuses to follow the customs or rules of a group to which he or she belongs. A maverick is often admired for his or her free spirit.

Perhaps, this is what Pádraig and his fellow brain injured friends are. Mavericks.

They have refused to be locked up in a nursing home, clean and fed. With their free spirit, they will overcome any obstacles. Even the stairs at the bottom of the Mansion House where they got stuck because someone pressed a wrong button.

Every day, they celebrate life. With a spirit of hope and new beginnings. In the face of great adversity.

When we’re in our stride there’ll be no stoppin’ us.

We’ll go all in. Shirts wide open. Flapping like wings.

The vote is the most powerful instrument ever devised by human beings for breaking down injustice and destroying the terrible walls which imprison people because they are different from others. 
President Lyndon B. Johnson

Last Friday, Pádraig exercised again his right and used this most powerful instrument to destroy the terrible walls which imprison people because they are different from others.

There used to be times when everybody could vote, except if you were a woman; when you had a right to education, except if you were black; a right to an intimate relationship, except if you were gay.

The time has come to afford everybody the right to fully participate in society, even if you have a severe brain injury.

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I went to Düsseldorf last week to contribute to the Annual Congress of the German Society of Neurorehabilitation, sharing aspects of the outstanding work being done at the An Saol Foundation for a group of people who up to now had been left behind. Together with colleges from the An Saol Foundation, University College Dublin, and Byowave, I had prepared details of our work with the rack project, the implementation of WHO guidelines, and the use of computer games by some of our clients.i

Arriving at Düsseldorf, I realised that Mary Robinson had been on the same flight. Will I or won’t I…? In the end I didn’t. It was too early for all, it would have been totally out of the blue, and a little inappropriate.

I left my bag in the hotel which had a great view of the Düsseldorf soccer stadium which, to my amazement, had a roof! The walk to the conference centre along the river Rhine cleared my head which, for the next couple of days, never really stopped spinning.

In the middle of it all, Prof Jörg Willis, a distinguished member of the An Saol Foundation’s Clinical Advisory Committee and a long-standing friend of the An Saol Foundation, received the 2024 distinguished member’s prize by the Association.

This year, people started to take note of the incredible developments that are taking place in Ireland.

Our initiatives, as small as they still are, seem to be leading the way in the development and the delivery of rehabilitation and habilitation services for those with long-term and severe brain injuries.

There is nothing that will stop us from breaking down injustice and destroying the terrible walls which imprison people because they are different from others. And not just on voting day.