Jag skulle inte ändra dig för allt i världen. Men jag skulle ändra världen för dig.

Jag ser samma berättelse återkomma i olika medier nu. TV4, Svenska Dagbladet, GP, Aftonbladet… “Allt färre föds med Downs syndrom”, “Downs syndrom på väg att försvinna” och “Är de den sista generationen med Downs syndrom?”

…

Jag får en klump i magen.

Det gör ont.

…

Under denna Corona-pandemi med all dess dysterhet, isolation och svårigheter vet jag inte hur många gånger jag tänkt att alla borde verkligen få ha en Vanja i sina liv. En person med Downs syndrom som kan ge så mycket av sig själv på ett så osjälviskt och närvarande sätt som ingen annan. På ett sätt som, faktiskt, bara andra som också har Downs syndrom kan.

…

Den som har fått känna hennes närvaro, uppleva hennes självklarhet vet vad jag menar. Den förstår att personer som hon behövs. Att personer som hon får vårt samhälle att må bra. Hade vi betalat människor lön utifrån må-bra-index istället för effektivitet hade jag inte behövt oroa mig för hennes framtida karriär på arbetsmarknaden. Hon och hennes kompisar hade haft topplöner.

…

Jag väljer att inte fullt ta in rubrikerna och vinklingarna. Att inte falla samman av upprördhet över det faktum att det är ett sorteringssamhälle som etikprofessorn indirekt ger utrymme och uttryck för. Men noterar skillnaden. För några år sedan skrev jag detta blogginlägg – om vikten av att aldrig tystna. Att debatten måste få fortsätta föras – just för att den är så komplex. Och att perspektivet från en vuxen person med Downs syndrom aldrig får eller kan bortses från i all kommunikation och medial uppmärksamhet som ges åt denna fråga.

…

Med stor sorg konstaterar jag därför nu hur rubrikerna i sig ger utrymme för att diskutera frågan på ett för mig fullkomligt absurt sätt. Hade KUB-testet lanserats idag tror jag faktiskt inte det skulle ha kunnat införas på ett sådant sätt som det nu blivit. Som något allmänt vedertaget. Som det är idag blandas det ihop med andra saker – som möjligheten att få ett tidigt ultraljud, att se allvarliga komplikationer hos fostret, och plötsligt läggs möjligheten att upptäcka Downs syndrom in i samma “paket”. Vips så har hela samhället plötsligt köpt ett förhållningssätt där vi sorterar foster på ett oerhört diskriminerande sätt för en grupp individer. Skattefinansierat till stor del dessutom.

…

Därför blir jag så ledsen nu. För rubrikerna vittnar om en uppgivenhet. En bestämd form. Det är såhär det kommer att bli. Inte en diskussion, en dialog, en komplexitet. Trots att journalisten bemödat sig om att göra ett långt reportage med olika röster i GP, trots att TV4 sänder inslag där otroligt kloka Linda, mamma till Adelina, och som driver Instagram-kontot Tecken som stöd berättar om hur det är att vara förälder till ett barn med Downs syndrom, trots att fantastiska Emily , mamma till två barn med Downs syndrom, ges utrymme att berätta sin syn på frågan i Aftonbladet, så är tonen redan i ingången till frågan plötsligt en annan. Det är såhär det blir nu. I framtiden blir det färre. 

…

Och det, lagom som världen verkligen skulle behöva och må bra av fler personer med Downs syndrom… Ja, det är min absoluta övertygelse. Men då talar statistiken ett helt annat språk. 

…

Därför känner jag att det är bråttom nu. Bråttom att få olikheter att mötas på riktigt i skolan. På jobben. I kvarteren. Inte dela upp i sär och icke sär. I vi och dom. Då skapas osäkerhet inför det okända.
…

Nu ställer jag därför mitt hopp till uppvaknandet post-Corona. För kanske finns det ändå chans till att vi värdesätter andra saker då? Att samhället förstår att ALLA individer verkligen har en roll att fylla? Att leva här och nu och må bra och njuta i stunden är kvaliteter som man vill ha omkring sig? Och att personer med Downs syndrom verkligen behövs i fler människors liv! I våra klassrum, på våra arbetsplatser, på våra gator. Och i våra familjer ❤  

…

Jag ser det hos var och en som möter Vanja. Hon lämnar ingen oberörd. 

…

• 

• 

• 

Det finns ett citat jag läst många gånger på föräldra-konton i sociala medier och som passar så bra just här. “Jag skulle inte ändra dig för allt i världen. Men jag skulle ändra världen för dig.” Precis så känner jag när jag läser de där rubrikerna och tänker på 2030. Att jag så innerligt önskar att världen får bli berikad med ett gäng nyfödda barn med Downs syndrom även då. Att världen välkomnar dem med öppna armar. Och att du Vanja, får stå där som en förebild på väg ut i ett arbetsliv som äntligen har förstått att öppna dörren för din otroliga kapacitet och förmåga.

Why the new normal is more than ’the new normal’

Times of crisis are also the times for changes. Not planned structured changes, but changes ‘that just seem to happen’, and then somehow seem to stay afterwards.

Many have made comparisons economically between the Covid-19 effect on the world economy and the big depression in the 1920-1930s. It made me think about ‘The new deal’ for some reason. That this was what came after the big depression and from this period of big reforms and that it really is something everyone remembers from the vocabulary and history books.

Right now, in difficult Corona-times, we have this new saying floating around. I hear it pretty much everywhere. The saying about the ’new normal’. 

‘Maybe this is the new normal now’ … or ‘This will likely be a part of the new normal after this pandemic is over’.

What is referred to is often how work habits have changed towards more digital meetings and working from home and/or the way we socialize in large groups. That those things have changed, maybe forever.

What I tend to really like about this, and what I hear from my angle and the way I interpret things from where I am in life – this also contains something rather beautiful. Beautiful because it shows that the mainstream crowd has decided to challenge the term NORMAL.  Ok, one might say – it simply means that things will be shifting towards one way or another. But what I hear is not only this, but rather I believe it implicates and tells everyone the lesson of that what’s ’normal’ today might not be seen as ’the normal’ tomorrow. That normal is a changing concept. N o r m a l can be challenged!

This is exactly what I dream about with the name ’Our Normal’ and why we decided to work with this name to build our organisation. Because we want to show the world that there can be a new normal. That the norms are only there to be challenged! A normal distribution curve could include people’s shoe sizes or blood pressure and you will get some certain curves. Then if you look for people’s EQ or IQ you will get completely different curves. Everyone is different plots on those different curves and there is no such thing as an altogether curve of ’who’s normal’. And even it there was one – it is ever changing.

Normal distribution curve – read more at Khan Academy

That’s why I am hopeful about those ’new normal’ speculations floating around right now. The phrase have appeared for a reason, and even if the topic which brought it up, the Covid-19, is something I believe we all agree we would have preferred to live without, I hope it at least brings us more enlightenment about ’normality’ and how we use that phrase. 

Nothing is forever ’normal’. 

And no one is always ’normal’.

But everyone is sometimes ’normal’. 

Let every flower flourish!

In a time when AI takes over many of our tasks, I believe the importance of non neurotypical skills will rise.

I have a thought coming back to me more and more often right now. Or not just a thought, maybe rather a vision. A vision which includes a bright future for people with diagnoses and “non neurotypical” behaviour.

I am currently reading the book Life 3.0 written by tech well-known AI researcher Max Tegmak. A reading experience which left me with many thoughts about the future and what will really matter to humanity. In the book Max Tegmark clearly points out how many of the jobs we do today soon will be taken over by AI/robots – jobs like drivers, doctors, accountants, journalists, legal advisors etc. The change is already going on everywhere around us today. And of course one of the questions that immediately arises is; what will be left to be done by us human beings?

At Pilane open-air sculpture park – ”Anna” by Jaume Plensa

This is where my head starts spinning and where my vision of the bright future takes off.

Because perhaps this shift will affect the way we value IQ versus EQ? Perhaps outstanding EQ skills will matter a lot more?
We have lived in a time where IQ has been highly valued over EQ. But what if our robots can deliver so much better IQ than any human being? How will this affect how we value “high IQ scores” on different tests? And how will it affect how we value EQ and people who can handle human relations in a way robots simply can’t?

I know there are lots of programs, apps, physical products out there focusing on developing robots which can also be empathic in order to handle relations and cure feelings of loneliness (like the Norwegian company No Isolation) which is one of many companies focusing on this topic right now. But I also see that there is something, almost mysterious, happening with people when they meet my daughter Vanja. Vanja who was born with Down syndrome, and who I’d say is highly skilled when it comes to EQ.

It’s like she, almost without being aware of it, opens up a direct channel to other people’s inner selves and inner feelings. Like they simply can’t reject to smile, or for a second or two actually enjoy life a little bit more. (Ok, I realize that I am biased here – maybe I seem like a crazy mum putting my own daughter on a pedestal right now, haha, but I am sure that there are more people out there who would agree when it comes to meetings with individuals with other persons born with Down syndrome.)

I would be happy to receive your thoughts and comments about this observation, because I honestly feel that she, and her peers also born with Down syndrome, has something very important to tell humanity. And the importance of what they have to offer will rise in a time where AI takes over more and more of other people’s jobs, and perhaps also cause people to feel that their lives lack a bit of meaning.

Vanja and Hillevi strolling together

Another skill which I believe will become more and more important is the ability to stay focused on what you do. Not that robots won’t be able to do this – but because this will be crucial for humans in order to not lose control. And the fact is that this is a skill which many people with non neurotypical behaviour, and diagnoses like ADHD and/or on the Autism spectrum have; the skill of hyperfocus. In a time where more and more neurotypical persons have difficulty focusing on one task – (perhaps because of the widespread addiction to social media ) and many people can’t focus on reading a text longer than 5 minutes read – my prediction is that more and more companies will start to really value this skill of hyperfocus. Because to keep up with the AI we are developing right now it simply will not be enough to have people working in those companies who are generalists or semi-focused specialists. We already see a trend where some companies have started this development of specific employment programs for employees with autism – like for example Microsoft, SAP and Ford, and I believe this is only the beginning. (But it will demand a lot from companies, HR departments, recruitment agencies etc to speed up this change…!).

Example of Microsoft’s Inclusive Hiring program

Furthermore – the skill of creative thinking is another one that AI won’t be able to handle perfectly. Because if it is “perfect” – I suppose it isn’t really creative? I won’t go into this now, but have written another post about this earlier.

So all in all, I am actually quite hopeful about the future for our children while I am writing this post. I SO much would like to still be a part of this world and this society when this shift will start taking place! The shift where people with disabilities are seen for their incredible abilities! Where my daughter will be seen and valued for her skills and where other families’ sons and daughters will be seen and valued for their skills. A future where the world embraces and values various non neurotypical skills and true neurodiversity more and more for every day!

 

Life 3.0, Max Tegmark

Exempel på bra och dålig reklam

Exempel på reklam – tre som är rätt och en som blir fel.

Det finns så mycket att säga om @arbetsformedlingen senaste kampanj (längst ner till höger) att det är svårt att veta var man börjar. Jag har vid ett par tillfällen haft möjligheten att prata inför marknadsavdelningar om just synliggörandet av personer med funktionsvariationer i marknadskommunikation och alltid slutat med exempel som visar hur det går åt rätt håll, (även om det går för långsamt). Med ”åt rätt håll” menar jag till exempel med kampanjer som @liberosveriges blöjpaket – där bland annat Archie var med som modell på förpackningsfoto som världens mest naturliga grej. Varken som offer eller superhjälte – bara som sig själv.  Eller Kate Grant används som modell för @benefitcosmetics. Eller Penny för @Kappahl. Inkludering och representation som ger avtryck och skapar skillnad på riktigt!

Så när jag nåddes av budskapen om arbetsförmedlingens kampanj fick jag gnugga ögonen flera gånger. Det kändes så otroligt plumpt och fel att jag trodde att jag måste feltolkat något. Man försöker göra en kampanj för att synliggöra och möta fördomar men allt man gör är att istället befästa, till och med förstärka, fördomar och förminska personer med funktionsvariationer genom att inte låta dem ta plats och synas precis som de är.

Att dessutom skapa bilder med ihopklippta kroppar/huvuden på detta sätt förminskar ytterligare, och därtill kommer texterna (Som t.ex. ”Skulle hon fått kunna bli Influencer?”) där @arbetsförmedlingen klampar i klaveret igen. Självklart finns det många helt fantastiska influencers med funktionsvariationer – som t.ex. @segunmajo, @frikraften @natalieeriksonss själv (vars huvud är bortklippt under just denna rubrik), @aronanderson, eller för den delen @gretathunberg!!

Arbetsförmedlingen skulle kunna hjälpa till att synliggöra och peppa kring deras resor istället!

Här kommer ett väldigt enkelt tips till alla som arbetar med kommunikation som ska förmedla ett budskap – eller egentligen all kommunikation över huvudtaget. Om ni testar att byta ut ’gruppen personer med funktionsvariationer’ mot andra grupper som faller under diskrimineringsgrunder – t.ex personer med ett visst kön, en viss bakgrund, en viss religion etc. och sen tänker på hur kampanjen eller kommunikationen uppfattas då? Då får ni ett snabbtest som kan ge direkt fingervisning. Med det enkla testet hade förmodligen felet identifierats direkt i det här fallet! Att involvera personer med erfarenhet själva är ett tips – men det är så givet att det känns banalt att ens behöva påpeka…

För övrigt anser jag att det är högst problematisk att det så ofta landar i att måla upp personer med funktionsvariationer som en homogen grupp med det gemensamma att det är synd om dem. Det är ju precis genom att sluta skapa sådan kommunikation som man kan börja förändra föreställningar, bryta fördomar och öppna upp arbetsmarknaden för fler! Hur tankeloopen var att denna kampanj överhuvudtaget skulle bidra till att ge fler personer med funktionsvariationer jobb förstår jag helt enkelt inte. Läs gärna även min tidigare post om den förra filmen  i kampanjen ”gör plats” som arbetsförmedling gjorde. Redan då reagerade jag på denna sammansättning av bärare av budskapet.

(För övrigt har jag samma problem med utställningar, projekt och modevisningar som bara synliggör personer med funktionsvariationer som en isolerad homogen grupp. När får vi se mer av riktig inkludering? När går modeller med funktionsvariationer på olika scener, i olika städer med olika uppdrag – och inte som en enstaka happening där celebriteter gråter i ett slags ’pitying-perspektiv’? Men det är såklart inte helt svartvitt alla gånger heller, och inte helt enkelt när resan att göra är så lång. Det får bli ett annat inlägg…)

 

My happy post about leisure activities and “Adaptive sports”

This one I will fill with photos. With Our Normal we have just done some interviews with families about their kids’ leisure activities – so I felt that I wanted to share some photos from what Vanja likes to do as well. As I wrote in my other post it isn’t always easy to find the right types of activities, but I am happy that she has found some things in life that she really likes to do.

To participate in weekly activities has been important for her already from an early age. This since she really likes routines and to know/foresee a bit of the things what will happen. And we have been lucky to find things she really likes to do; like dancing, swimming and gymnastics! Her new biggest interest however is cooking, so that’s something we try to do together at home more and more often.

(The photo of winter sports however, I must admit, doesn’t fully give a true picture. This is still more of a passion from other family members, but she really likes the huge stuffed animals that tend to hang out in kids’ areas of the Swedish ski resorts 🙂 ).

 

Vanja likes to paint

 

My less happy post about “Adaptive sports”

One of the hardest things for many parents of children with disabilities, and special abilities, is to find the right type of sport / leisure time activities.

This is partly because the range of activities being offered out there is limited. This is especially true if you don’t live in the bigger cities – but even in bigger cities like our there can be long queues to join a class or too little “adaptive activities” to choose between. Here the simple solution would be for the municipalities to take on a bigger responsibility and simply offer MORE.

But another reason is that “adaptations” simply aren’t that easy to do. I experienced this myself the other day together with Vanja. We have recently joined a new swimming school. Vanja, who loves to be in the water, is a bit like a fish already. She dives into the water full of energy and wants to have challenging tasks to do. If she gets bored she starts to dive repetitively and finally swallows too much pool water. That behaviour of hers is completely the opposite from some of the other peers in her class. So how do you plan for such a diverse group if you are a swim teacher?

To teach adaptive sports/adaptive leisure activities, if the clustering of the group is simply “adaptations” in general, must be one of the hardest things you can do. Because to think of everyone’s needs and find a “golden mix” of activities supporting and challenging every individual sure isn’t an easy task. Still I more than once have come across poor planning and preparations in those types of activities. The attitude is a bit that anyone can teach in those groups, like if it would be less serious?!

Yesterday in the swimming pool was one of those occasions when I got really tired of it all. Vanja got bored, started to do her own things and I was expected to stop her.  Because in “adaptive sports” parents take part. We are together with our child in the pool, at the gymnastics, in dance room, at the music session etc etc. Wherever we join an “adaptive” session it is expected that the parents are there participating together with their child. And of course I understand the reason for that; my daughter needs my support. But I am also starting to get tired of being expected to be not only the supporter, but also the teacher/instructor as well.

Sometimes I feel that what I am really jealous of when it comes to “typical” parenting that’s exactly this; that they don’t need to be anything else but parents. That they aren’t expected to be supporters/assistants during every single activity and to also be the “on field instructor” because the real instructor’s adaptations don’t fit for their child.

I realize that it is a difficult equation to solve. But I dream of that time in the future when we finally, hopefully, find the right activity, with the right type of adaptations, the right engagement from the instructor and the right attitude from everyone around so that I can be ONLY a parent. Then I happily would sell socks, bake cookies, engage in the association’s board committee and everything else other parents do!

The launch of the Our Normal shop!

I got really quiet for some time. Simply because I was so busy with the launch of Our Normal shop! And it was so much fun – we launched it to support the big Swedish campaign ”Musikhjälpen” this year focusing on Disability rights and Inclusion.

I let the photos do the talk. Emma Jutemar (@nordlyckan on Instagram – check out her beautiful account) did an amazing job with all the photos!

For us ”accessibility” sometimes would be a high fence

The other day it happened; Vanja ran away from school.

Thankfully, she was found short after – she had crossed the building and taken the elevator to another floor. She was never worried herself, but of course the teachers were. As well as me and John when we found out about it.

Already since she was three years old, this has been something I have constantly been worried about; her interest for taking off in all kinds of different settings and surroundings. She clearly wants to explore things and to be more independent than she can handle on her own. Visual or physical boundaries (like in this case three doors, one long corridor and an elevator) won’t stop her.

Before Vanja was born, and before I had met other kids with Down syndrome, I had never given this with runaways a thought. Of course, I know every single parent worries about their 2 or 3-year-old, and that they find it stressful to go with them in a mall or at an amusement park. But in this case it is something totally different. Because our girl, and many other children with Down syndrome in the same age, has an interest for running away or taking off on their own, also way up in age. And this interest, together with the challenges of sometimes understanding the consequences of your own actions, can become quite troublesome.

So for us, as I have written before, a mobile door alarm is one of the most important things that we always carry with us. At home we have a security chain on our door, and we also have bought a gps watch for Vanja, so that we can keep track of her in case she takes off. But since we can’t be around all the time, gps-watches aren’t 100% reliable and we can’t keep her behind locked doors – different types of ”safety tools” are needed in other surroundings too.

I believe that when people hear and think about the word ”accessibility”, they seldom think about a high fence or a door alarm. But for us, that is what true accessibility looks like. If there could be a school in our area with a schoolyard surrounded by a fence, if there were ”closed” playgrounds in the parks of the city centre, places would be a lot more accessible for us.

Just a few weeks ago there was a guy in a Swedish town, a 12-year-old boy born with Down syndrome, who had left his home on his own and didn’t come back. The days that followed the biggest search for a missing person in Sweden ever took place. It was really overwhelming to read about how 3000 persons participated in the search, of course dedicated to find him alive. To receive the tragic news that his life in the end couldn’t be saved, that he had been found drowned in a nearby river, left me totally devastated  and in tears. 
Every parents’ biggest fear.
And we live so close to it all the time.

Of course, to live life means there are risks. For everyone. But we have a society where we are good at preventing risks. We also have a society striving for increased accessibility. And with this post I just want to give some reflections on that word and what it can mean. Accessibility for sure means building inclusive playgrounds and parking lots and getting rid of thresholds in public spaces. But it should also mean creating ”safe zones” for some chronic, very curious and determined explorers. For their safety first and foremost. And also so that their parents (and teachers) can sit down and take a deep breath, at least for a few seconds, to save up some energy before heading into the next ”unsafe area” (which is pretty much everywhere)…

”I want to live in a world where disability is not the exception, but the norm”

I have seen this Ted Talks by Stella Young before, but came across it again the other day, and just felt the need to share it once more. It is simply brilliant and SO true. And I love her title: ”I am not your inspiration – thank you very much”.

Because of course, people with disabilities are not around to be non-disabled people’s inspiration. I guess most people would agree with that, but still those types of comments are all over internet and social media all the time…

Watch it.

 

Yet another day at the playground…

… and all of a sudden I realize that maybe, before we even know it, those times that have seemed to be never-ending aren’t that never-ending after all.

From now on I promise myself that I will do my best to totally enjoy every single moment at the playground every time!

(I am pretty sure that I usually look more bored at the playgrounds than in those photos…  BUT – not anymore! : ) ).