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ROAR Magazine is an independent journal of the radical imagination providing grassroots perspectives from the frontlines of the global struggle for real democracy.
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March in solidarity with the Sudanese revolution. Kreuzberg, Berlin. February, 2019 Photo: Hossam el-Hamalawy / Flickr
Now is the time: Black struggle from Sudan to the US
Movement & Mobilization
There is an opening in front of us, and now is the time to seize it. The 2019 Sudanese revolution holds a key to a transnational understanding of liberation.
Bedour Alagraa
And then one fine day the bourgeoisie is awakened by a terrific boomerang effect: the gestapos are busy, the prisons fill up, the torturers standing around the racks invent, refine, discuss…And they wait, and the hope; and they hide the truth from themselves, that it is barbarism, the supreme barbarism, the crowning barbarism that sums up all the daily barbarisms.
— Aimé Cesaire, Discourse on Colonialism
As the protests demanding justice for George Floyd quickly turned into a nationwide uprising with people taking to the streets in all 50 states in America, we are called to study and reflect on the radical movements that came before us. Indeed, we would be remiss if we were to gloss over or ignore both the lessons and pitfalls of the radical uprisings that Black people have launched and sustained around the world.
With this in mind, this moment offers an opportunity to reflect on one of the more recent upheavals: the Sudanese revolution that began in late 2018. The purpose here is not to conflate the struggles of the Sudanese people with other struggles, including the one currently being waged in America. The point, rather, is to understand how Black struggles globally are co-constitutive and kindred. This moment demands that we draw lessons and motivation from one another, and recognize that local ecologies of struggle hold the keys to a transnational and anti-national understanding of liberation.
A monumental uprising; not a perfect revolution
On December 19, 2018, people from all ages, genders and regions and a wide variety of occupational, class and ethnic backgrounds launched what would become one of the longest, most sustained and most rupturous moments of protest in Africa's history and, by no contest, in that of Sudan. After months of hyperinflation, long queues for ATMs and, finally, a 40 percent hike in the price of bread, nearly a dozen cities across Sudan erupted in protests.
What began as protests against devastating economic conditions, soon transformed into calls for the removal of president Al Bashir and for a total upending of Sudan's entire economic and political systems, social norms, reparations for Darfur and South Sudan, de-Arabization of the national culture and media and an end to theocratic rule, among other demands.
At the time of the revolution, Omar Al Bashir, a racist ethnonationalist who massacred millions of people in Darfur, South Sudan and the Nuba Mountains, had amassed almost $9 billion in personal wealth, siphoned from a country that had already been bled dry by sanctions imposed by the international community. Add to this the fact that Sudan has spent most of its history since independce engaged in civil war, and it becomes clear that throughout his decades-long reign, Al Bashir was a de facto wartime president who ruled by force rather than popular consent.
These are the conditions under which a broad based coalition of students, labor unions, women's rights groups, rebel factions, neighborhood committees and professionals associations, united under the banner of the Forces for Freedom and Change, managed to mobilize huge swathes of working class people and professionals alike. It was not a perfect revolution by any means, and it would not benefit any of us to pretend that race, gender, geography and, in particular, class, did not present major antagonisms inside the movement from its initiation to this day. Indeed, the leverage held by middle class Sudanese both in the country and in the diaspora is something that still requires a remedy.
No women were present at the signing of the transitional agreement in early 2019, despite sexual violence being the main weapon of terror used by the ruling party, and despite women making up the overwhelming majority of protesters.
We also cannot deny the ways in which the armed struggles of people in the provinces over the last few decades, as well as the disproportionate violence meted against them during the protests, were omitted from the conversations about the non-violent tactics used by protesters, as well as the Khartoum-centered bias of international media and the diaspora.
Yet we also cannot deny how monumental this uprising was; what a fantastic break from the past it offered. It also reveals how, time and time again, a diversity of tactics and, most of all, creativity, can carry and sustain a movement in ways that are both old and entirely new at the same time.
Occupying the Qiyada
Protests, strikes and widespread civil disobedience began in earnest in December 2018, building on prior protest movements in 2011 and 2013, and continued into the new year, despite mass arrests and the brutalization of protesters by the regime's security forces. In response, Al Bashir declared a state of emergency on February 22. Protests intensified on International Women's Day, and continued until April 6, the day which marked the tipping point of this uprising.
April 6 is the anniversary of the 1985 revolution which overthrew the military dictatorship of Jaafar Nimeiry, paving the way for Al Bashir's rise to power four years later. It was also just four days after protesters in Algeria had booked a major victory in forcing president Abdulaziz Bouteflika to step down after 20 years in power. In Khartoum, hundreds of thousands of people marched to the capital's military headquarters, starting a sit-in in the area known as the Qiyada that would last for two months.
The Qiyada managed to do all that the state had failed to do; there were areas dedicated to political education, improvised schools, Quran lessons, Bible studies, meals were being provided with funds raised in the diaspora, doctors on strike offered free medical examinations, therapists were offering free counseling and men and women patrolled night and day to ensure the safety of all the protesters.
In a country in which artistic expression was stifled for more than thirty years, the Qiyada was an explosion of the frustrations, desires, strivings, disappointments experienced by young people in particular, who gave concerts, danced, sang, and covered the area in street art. Outside the Qiyada, neighborhood committees were established to develop plans for civil disobedience, share information, share resources and practice the types of non-hierarchical democratic associations that had been denied to them for decades.
Meanwhile, in the midst of a media blackout and initial refusal of major international outlets to cover the uprising in December, social media was harnessed in what can only be described as a remarkable display of creativity and innovation. Sudanese in the diaspora were providing rapid-fire translations of documents and updates, Whatsapp group chats were harnessed to share information on the whereabouts of family members and to collect and distribute funds.
Young people memed their hearts out, offering unrelenting critiques of the state and a balm for those living in the midst of such a tempest. Facebook groups dedicated to gossip where mobilized to out informants and organize students. The social media presence was so undeniable that soon the entire world was talking about Sudan and bearing witness to this cataclysm, decades in the making.
Finally, on April 11, Al Bashir was ousted in a military coup led by his cousin Awad Ibn Auf.
Of course, the people were not satisfied and after only one day in office and with the number of people in the Qiyada continuing to grow, Ibn Auf quickly resigned. General Abdel Fattah al Burhan took over, aided by Mohamed Hamdan Dagalo, better known as "Himedty," the notorious Janjaweed commander responsible for the ethnic cleansing campaign in Darfur nearly 15 years ago. In response, the civilian coalition called for an intensification of the sit-in and a general strike.
In early June, the first week of Ramadan, Himedty's forces attacked the sit-in with live ammunition, setting tents on fire and committing mass sexual violence on women in the Qiyada. Internet was blocked to prevent any evidence of their crimes from leaking to international press, and phone lines were cut for ten days as the massacre continued. Despite the killings, strikes and protests continued until mid-July, when the government conceded to the demands of the protesters and a transitional peace agreement was signed. This agreement is only the first step in a long struggle for liberation in Sudan.
March in solidarity with the Sudanese revolution. Kreuzberg, Berlin. February, 2019. Photo by Hossam el-Hamalawy / Flickr
It would be difficult to find two more different political, social, economic and cultural realities than Sudan and the United States. Regardless, the current moment requires us to push against the circumscriptions placed on our political imaginations — which includes any assumptions that the struggles in Sudan have no bearing on our struggles on this continent — in order to honor the actions and aspirations of those before us and those around us at right now.
This imaginative push also requires us to engage in a hemispheric conversation that forges connections that are not only unlikely under our current world-system, but one that pushes against the forces of neoliberal atomization, which stymies political, intellectual and social intimacy at the interpersonal and collective levels, and which mystifies, sticks-and-moves, disguises itself, tricking us into thinking its crumbs are akin to freedom itself. This trickery, wherein neoliberalism tells us we are freest when we think of ourselves as wholesome individuals with a freedom of choice — between violence and non-violence, for example — is simply the other side of fascism's janus-faced appearance.
So, when we ask what can be learned from the recent struggles in Sudan, we are brought full circle to a host of durable and effective strategies that make up the nucleus of movement-building, most of which are present more than ever in the uprisings across the US. This includes an emphasis on the provision of services to the people, the importance of building and sustaining truly broad based coalitions, with participation from every sector of society. It includes creating and implementing alternate democratic structures, like neighborhood committees, that do not mimic the state but exceed it in every way. It reveals the manner in which movements tend to fall short of their goals due to deep and possessive investments in patriarchy.
During the uprisings in Sudan and elsewhere, political education has been paramount, as well as the importance of controlling the dissemination of information to the world, especially on social media, which not only offers on-the-ground information in real time, but is also a site for politicizing people and for the escalation of demands. Finally, and most importantly, the efficacy of general strikes in bringing governments to their knees. This was true decades ago, it was true in Sudan last year, it is evident in the way young organizers have seized this current moment here in North America, and it is, in my estimation, still the way to sustain people's physical, mental, and emotional steadfastness during and after these moments.
So when we ask ourselves, "What is to be done?," I join the ranks of countless dissenters and radicals who have reclaimed Martin Luther King Jr. from the disgraceful liberal sanitization of his politics, and offer some of his words, from his "I have a dream" speech, which has been consistently manipulated by liberal accommodationists and color-blind racists alike. He remarked: "Now is not the time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism." The young people in Sudan, Minnesota, and all over the world have refused this gradualism in favor of an urgency that has placed abolition and liberation firmly within our grasp.
People are dying in the hundreds of thousands from a pandemic that has blown the lid off of an always-already inept health care and social welfare system. Forty million people are out of work, without basic goods and without the already inadequate healthcare which their employment provided. People are in the streets and are demanding the abolition of police, prisons and capitalism. People are rapidly politicizing and educating themselves.
Now is the time to seize the opening in front of us. So when we ask what is to be done, we know that the tasks are small and large at the same time. Most importantly, we know that in order to give ourselves a fighting chance, we must shatter the neoliberal obstructions that prevent us from thinking of ourselves outside of and against nation, hemisphere and market. An ethic which can be summed up by a chorus, a refrain, offered by Saidiya Hartman — a bridge for our thinking and doing in this moment, "How can I live? I want to be free. Hold on."
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Bedour Alagraa is a Professor of Black Studies at the University of Texas at Austin. She is currently working on her manuscript entitled, The Interminable Catastrophe, and is the co-editor of the Black Critique book series at Pluto Press.
Source URL — https://roarmag.org/essays/now-is-the-time-black-struggle-from-sudan-to-the-us/
Race & Resistance
"Claim no easy victories": reexamining Black rebellion
james pope
Reform is not enough: defund the police, then abolish it
Dave Braneck
Magazine — Issue 10
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We too often equate work with worth. If you're unable to work due a mental health condition or any other reason, you're deemed worthless. Yet if you manage to secure a job but end up struggling with your health to the extent it impacts on your work, you're judged as underperforming. You're treated like you're not really trying, even though you are actually working ten times harder than your colleagues in order to manage your condition and stay in work. This was my experience. It wears you down and feels like a vicious cycle you can't escape. It isn't any wonder that Young Women's Trust found so many young women are saying that work is making them ill.
Mental health conditions are unseen, so the employee must disclose them to the employer to stand any chance of getting reasonable adjustments or understanding from them. This can be terrifying – you're never sure how they're going to react or whether they'll think you can't do your job. I once had a manager who dismissed my concerns about fire safety and building security as me feeling 'more vulnerable' than other employees, a comment which I felt was a double insult on both my mental health challenges and on me being a young woman.
Things that come naturally for many people can be very difficult for those of us with a mental health problem – concentrating in a noisy office, using the telephone and getting to places on time. When this affects your work, it can be wrongly seen as laziness. Poor mental health is often perceived as poor performance in a way that it wouldn't be with other difficulties.
I was labelled as careless and lacking attention to detail when I kept making spelling and grammar mistakes in things I was writing. I was having to write things under pressure to tight deadlines while managing my fluctuating mental health and excessive tiredness and was just about managing to force myself into work each day. My manager would highlight all the mistakes in my work and accuse me of not checking it properly.
It can become too much; you're too unwell to work and have to be signed off for a period of time. Statutory Sick Pay (SSP) is £92.05 a week. That doesn't even cover my rent, and you cannot claim any other benefits while on SSP as you are still employed. I used up all my company sick pay (two weeks' full pay) when I was signed off due to poor mental health last year; so, when I got signed off for another month this year, I was so stressed about how I was going to live on SSP and pay my rent that I ended up going back into work even though I was really unwell. I ended up forcing myself into work, getting more ill and getting in more trouble with my employer than if I had just been able to have the time off to recover without worrying about money.
I only have myself to look after. Imagine if you had children or other caring responsibilities and were trying to make £92.05 cover everything from your rent, to bills, to food for your whole family.
The whole world seems to be talking about mental health, but very little seems to be being done. This is especially true on a governmental level, where mental health services are still chronically underfunded, the benefits system isn't working and sick pay makes people sicker.
My experiences with work have often left me feeling worthless, like I am not capable of anything and that maybe I am just not able to work at all. But somewhere deep down I know that's not true. I know with the right support I'm able to do a good job and to even excel. But it's only with the support from organisations like Young Women's Trust that I have slowly started to believe that.


text:
using IdentityServer4.Stores;
using System;
using System.Collections.Generic;
using System.Text;
using IdentityServer4.Models;
using System.Threading.Tasks;

namespace IdentityServer4.Contrib.MongoDb
{
    public class MongoDbPersistedGrantStore : IPersistedGrantStore
    {
        public Task<IEnumerable<PersistedGrant>> GetAllAsync(string subjectId)
        {
            throw new NotImplementedException();
        }

        public Task<PersistedGrant> GetAsync(string key)
        {
            throw new NotImplementedException();
        }

        public Task RemoveAllAsync(string subjectId, string clientId)
        {
            throw new NotImplementedException();
        }

        public Task RemoveAllAsync(string subjectId, string clientId, string type)
        {
            throw new NotImplementedException();
        }

        public Task RemoveAsync(string key)
        {
            throw new NotImplementedException();
        }

        public Task StoreAsync(PersistedGrant grant)
        {
            throw new NotImplementedException();
        }
    }
}

redpajama_set_name: RedPajamaGithub


text:
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text:
Part of Dreamliner
Part of Dreamliner's belly falls off mid-air
Aditya AnandAditya Anand / Updated: Oct 15, 2013, 01:05 IST
32-square-foot hole in the aircraft fails to trigger an alarm, goes unnoticed till ground staff preparing for return flight raise alarm.
A fuselage panel of a Dreamliner flying from Delhi to Bangalore on Saturday fell off mid-air, leaving a gaping hole in the aircraft's belly and putting the lives of 148 passengers and crew on board at grave risk.
The Air India flight AI 803, however, landed safely in Bangalore at 9.25 am. Since the missing panel did not trigger an alarm in the cockpit, the pilots remained unaware of the mishap till the time the ground staff, preparing the aircraft for its return flight, detected the 8 feet x 4 feet breach.
The aircraft was grounded and a massive hunt for the panel was launched at the Bangalore airport, where it was assumed it could have fallen because of a hard landing. When the airport staff found nothing on the runway, the Delhi airport too was asked to look for the missing body part. They drew a blank too.
Confirming the incident, an Air-India spokesman on Monday told Mumbai Mirror, "There was a technical snag. A panel did fall off, but it was replaced and (the aircraft was) certified to operate."
Aviation expert Vipul Saxena, however, expressed concern that the falling of such a big panel did not trigger an alert in the aircraft's cockpit. "It's strange that the pilots did not notice anything. A hole in fuselage must have had some impact on the aircraft's stability," he said.
The aircraft was being piloted by Captain Gopal Nambiar.
The Directorate General of Civil Aviation has launched an inquiry into the incident.
As there were no spares available at the Bangalore airport, a replacement panel of another Dreamliner located in Delhi was removed and flown in so that the AI 803, which remained on ground for 10 hours, could fly back. The 160 passengers, who were to fly on the return leg to Delhi, had to wait till 6 pm.
ADGCA official, who did not wish to be identified, said the aircraft was cleared to fly again as there was no internal damage.
"We examined the aircraft and found that the panel fastened by rivets had come off. As the internal examination did not show any damage, it was cleared to fly back," he said.
Air-India operates the Dreamliners on domestic circuits between Delhi-Chennai, Delhi-Bangalore and Delhi-Kolkata routes besides international operations to London, Frankfurt, Paris and Australia.
In November 2010, a Dreamliner made an emergency landing after smoke and flames were detected in the main cabin during a test flight over Texas.
In January 2013, two major Japanese airlines ANA and JAL announced that they were voluntarily grounding or suspending flights for their fleets of Dreamliners after multiple incidents involving different 787s. These two carriers operate 24 of the 50 Dreamliners delivered to date.
In July 2013 a fire broke out on an empty Ethiopian Airlines Dreamliner that was parked at Heathrow, forcing the closure of Britain's busiest airport. Just a few weeks later, Qatar Airways grounded its fleet of Dreamliners due to problems with an electrical panel.
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Q: Can't grab element from generated list So I have a start to a program where I generate a list of values in an unordered list with delete buttons that delete the corresponding entry into the list on each line. When I try to grab the id of the appropriate
 element upon clicking the button, it will always return null and I'm not really sure why.
The list of values is generated with the following function when a button is clicked:
const random = () => {
        let remove = document.getElementById("generate");
        remove.remove();
        document.body.appendChild(list);
        while (chosenNames.length < 20) {
            let num = Math.floor(Math.random() * names.length)
            let inputName = names[num]
            if (chosenNames.indexOf(inputName) === -1) {
                    chosenNames.push(inputName)
            };
        };
        const nameGen = (name) => {
            let add = document.createElement("li");
            let deleteButton = document.createElement("button");
            deleteButton.setAttribute("class", `deleteButton`);
            deleteButton.setAttribute("onclick", `deleteClick(${name})`);
            deleteButton.innerText = "X";
            add.setAttribute("id", name);
            add.setAttribute("class", name);
            list.appendChild(add);
            add.innerHTML += `${name} `;
            add.appendChild(deleteButton);
        };
        chosenNames.forEach(nameGen);
    };

This removes the first button and chooses 20 values to put into the list. Upon generation, the HTML ordered list looks like:

         k
         <button class="deleteButton" onclick="deleteClick(k)">X</button>

         d
         <button class="deleteButton" onclick="deleteClick(d)">X</button>

Rinse and repeat for all 20 values. Based on this, I should be able to click the button and run the function deleteClick with the parameter of the letter it corresponds to. That function is as follows:
const deleteClick = (name) => {
        let getList = document.getElementById("nameList");
        let element = document.getElementById(name);
        console.log(element);
        getList.removeChild(element);
    };

I haven't fully worked out the removal part of it yet so I'm not sure if that's wrong or not, but regardless, the output in the console is always null. So somehow this function isn't grabbing the element with the correct id, and I'm not really sure why. Clicking on the button gives me the error

Uncaught TypeError: Failed to execute 'removeChild' on 'Node': parameter 1 is not of type 'Node'.

which is not surprising, considering the parameter is null.
Any help or insight would be much appreciated :)

A: k and d are unassigned variables. In your code, change ${name} to '${name}' so that the resulting click event handler passes a string instead of an unassigned variable.

A: You need to output quotes around the name value when setting the onclick attributes, in order for the function call to receive a string value:
deleteButton.setAttribute("onclick", `deleteClick('${name}')`);

redpajama_set_name: RedPajamaStackExchange


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Your MD
Health A - Z
All of Your.MD's Health A-Z articles are reviewed by certified doctors
Rett syndrome is a genetic disorder that affects approximately 1 in 12,000 females (it is rarely seen in boys). It causes severe physical and mental disability that begins in early childhood.
Content produced by Your.MD
If you think your child has Rett syndrome you should see a doctor within 48 hours.
Rett syndrome is rare and so the first stage in diagnosis is to rule out other more common conditions. If Rett syndrome is suspected, your child will need to be reviewed by a specialist paediatrician. A genetic blood test can confirm the diagnosis.
What is the treatment?
Treatment focuses on managing symptoms. If your child has Rett syndrome, a team of healthcare professionals may be involved in their care, including:
speech and language therapist
dietician.
Prescribed medication can be used to help improve problems with breathing, seizures and mobility.
When to worry?
If your child develops any of the following symptoms then they should see a doctor immediately:
seizure or fit
rapid, shallow breathing
loss of consciousness.
Rett syndrome usually goes unnoticed for the first few months of the child's life, although parents often realise with hindsight that their child did show some features of the condition quite early on.
Parents tend to first become aware of the condition when their child fails to develop normally and begins to show some of the signs mentioned below.
Experts generally describe four stages of the disease, although symptoms will overlap between each stage. The main features of each stage are described below.
Stage one – early signs and slow development
Stage one describes the changes that typically appear in the first 6-18 months of the infant's life. These include:
a general slowness in development
floppiness
difficulty feeding
abnormal hand movements (such as repeatedly making wringing, clapping or washing motions with the hands)
less interest in social contact and eye contact
not very interested in toys
walking awkwardly and poor co-ordination of trunk and limbs
Stage two – regression
Stage two, or the 'rapid destructive stage', usually begins between the ages of one and four and may last for weeks or months.
Your child will gradually or suddenly start to develop severe problems with communication, language, learning, co-ordination and other brain functions.
Signs at this stage include:
no longer able to use the hands purposefully; repetitive and uncontrollable hand movements take over
periods of distress, irritability and sometimes screaming for no obvious reason
social withdrawal and loss of interest in people (may be considered as resembling autistic behaviour)
unsteadiness of the body and awkward walking
rapid or slow breathing, including some breath-holding spells
problems sleeping
slowing of head growth/small head size
difficulty eating, chewing or swallowing and tummy aches, bloating and constipation
Stage three – plateau
Stage three of the disease usually begins between ages 2 and 10 and can last for years.
At this stage, girls are considered to have emerged from the period of regression in stage two.
Prominent symptoms during this stage may be:
floppiness of the limbs and difficulty moving around
not being able to use their hands to hold, carry or manipulate objects
teeth grinding and abnormal tongue movements
not gaining much weight
Also, about 70% of infants will develop epilepsy, usually after the age of two. Many develop irregular breathing patterns (for example, holding their breath or shallow breathing followed by rapid, deep breathing) and some may develop heart rhythm abnormalities.
During this stage a girl with Rett syndrome may show:
an improvement in behaviour, with less irritability and crying
interest in her surroundings
improvement in alertness, attention span, interest in people and communication
Many girls remain in this stage for most of their life.
Stage four – deterioration in movement
Stage four can last for years or even decades. The main symptoms at this stage are:
the spine bending to the left or right side (scoliosis)
spasticity (abnormal stiffness, especially in the legs), which may lead to
losing the ability to walk
However, the repetitive hand movements may decrease and eye gaze usually improves.
The seizures usually become less of a problem in adolescence and early adult life, although they will normally be a lifelong problem to manage.
What causes Rett syndrome?
Almost all cases of Rett syndrome are caused by a mutation (change in the DNA) in the MECP2 gene, which is found on the X chromosome (one of the sex chromosomes).
This gene contains instructions to make a particular protein (MeCP2) that is vital for brain development. The gene abnormality prevents nerve cells in the brain from working properly.
Almost all people with Rett syndrome have no history of the disorder in their family, and the mutation has happened spontaneously.
Why is Rett syndrome almost always seen in girls?
Each person normally has one pair of sex chromosomes in each cell – females have two X chromosomes and males have one X and one Y.
Rett syndrome results when half the cells in the child's brain and spinal cord are normal and half are abnormal (the child survives, but has a severe disability). This happens when the child has one X chromosome with the severe MECP2 abnormality and one X chromosome with the normal version of the gene. The child is almost always female as males don't have a second X chromosome.
Rare exceptions of Rett syndrome in males occur when, for example, the male is born with an extra X chromosome so he has three sex chromosomes (XXY; known as Klinefelter's syndrome), or when the change is found in only some of the boy's cells (known as mosaicism).
Males who carry the abnormal MECP2 gene on their only X chromosome will usually develop a serious condition known as infantile encephalopathy and will not often survive beyond two years.
Males with less severe changes in their MECP2 gene can live a long life and are affected with learning difficulties but usually less severely than in Rett syndrome. Females who carry such (milder) changes on one of their two X chromosomes will often be perfectly healthy.
How is Rett syndrome diagnosed?
If Rett syndrome is suspected from your child's symptoms, a blood test can be carried out to look for the genetic abnormality that has caused it.
However, the change in MECP2 is not found in every child with the condition – so finding the gene can confirm the diagnosis, but failing to find it does not rule out the condition.
How is it managed?
There is no cure for Rett syndrome and the symptoms can be very difficult to manage. You are likely to need help from a wide range of different health professionals.
Your child may benefit from some of the following treatments and aids:
Anti-epileptic medicine to control the seizures – drugs include sodium valproate, lamotrigine, carbamazepine and clobazam
Physiotherapy, attention to their sitting posture, a back brace and possibly spinal surgery to prevent their spine from curving further (read more about treating scoliosis).
A feeding tube and other feeding aids, making sure they follow a high-calorie diet.
Occupational therapy to help them develop skills needed for dressing, feeding and other daily living activities.
An ankle foot orthosis (lower leg brace) to help them walk independently.
A hand splint to help control their hand movements, if these are severe.
Picture boards, eye gaze technology and other visual aids to help them communicate.
Therapeutic horseriding, swimming, hydrotherapy and music therapy have been reported to be beneficial. Ask your healthcare team where you can access these therapies.
Girls with Rett syndrome will be dependent on 24-hour care throughout their lives. Their lifespan is shortened but many live into adulthood.
As a parent carer, it's important that you look after your own health and wellbeing too. The box on this page provides links to further information that may help you.
Find this article useful?
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The COHFACE dataset contains 160 one-minute long RGB video sequences of 40 subjects (12 females and 28 males).
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Beacon Departure
"I can get you a cheaper ticket if you let me amputate your legs: I can even take your thighs as a deposit," said the travel agent. He was clearly trying hard to be helpful: "It's not as if you'll need them where you're going, is it?"
"Is it possible to find a better price by booking me on a different routing?" I asked. "I'm very attached to my limbs." (Quaint and old-fashioned, that's me.) "Also," I hedged, "I don't have much fast money."
The agent sighed. His two eyes were beautiful: enormous violet photoreceptors that gleamed with a birefringent sheen. "Ms. Alizond. Krina. How can I put this? That could be a problem." He hesitated for only a moment: "Do you have any longer-term funds? Anything you can convert . . . ?"
I shook my head. "I only got here ten days—sorry, about a million seconds—ago, and I haven't had time to cash in any investments. I need to get to Shin-Tethys as fast as possible."
He looked pained. It was a warning sign I recognized well—he was on the cusp of deciding that I was just another penniless refugee, and any moment now he was going to slam down the shutters: Why are you wasting my time? I'd done it myself often enough to recognize the symptoms.
"I converted everything I had into slow money before I emigrated, as viscous as possible," I said hastily.
At least he didn't tell me to get out of his office. I could see his cupidity battling his cynicism—is she delusional? Cupidity won, narrowly: "Everything you've got is in slow money? Then how have you been eating?"
"Badly." He'd finally stepped out of role, revealing irrelevant curiosity; that was an opening I could use. Pathos first: "I've been sleeping on park benches and eating municipal gash to reduce my outgoings." (The raw, unprocessed hydrocarbon feedstock is vile but free: the good burghers of Taj Beacon provide it because it's cheaper than employing police to pacify the lumpen cattle by force.) "What cents I have I can't afford to up-convert in a hurry."
"So you've gone long? All the way long, everything locked down in slow money? Not even some medium dollars?" His eyes widened very slightly at the hint of cents, plural—which meant I had his full and undivided attention. Gotcha. He smoothly pivoted into oleaginous deference: "But surely you're aware that as little as a tenth of a slow cent could buy you a month in the most palatial palazzo in—"
"Yes, I'm very much aware of that." I had my opening. Now I narrowed my eyes and cut back on the vulnerability: I wanted him to want to make me feel I owed him some payback at a future time, not drool all over my wallet in the present. "I don't want to sell my soul just yet. I really don't. What I want to do is get to Shin-Tethys with all possible speed, using only fast money, cash in hand. Maybe when I've completed my work, and it's time to head home, I'll be able to splash out, charter a luxury yacht . . ."
"Oh." He looked crestfallen. "Well, I'm not sure that's going to be possible, Sera Alizond. You see, you're too late."
"Um?" He appeared to be entirely sincere. This was not what I wanted to hear! What I wanted was for this small-time hustler to go out of his way to get me a quiet unobtrusive berth, in hope of a payoff down the line.
"If you'd incarnated just ten million seconds ago, I had passenger berths down to Shin-Tethys coming out of my ears, going unsold! But we're past inferior conjunction now, heading toward superior, and you won't get a straight transfer orbit for love or favors. Your only option is to pay for additional delta vee, and that costs real money. Not to mention that there's a huge mass penalty. You'd need to charter a capsule specifically for . . ." He trailed off and glanced at my legs again, then did a double take. "Unless . . ." He glanced into his desktop, finger-doodled some questions to an invisible amanuensis: "Please excuse me, I was looking for passenger vessels. It might be possible for me to arrange a working passage for you if you have any appropriate skills." He paused again, his timing perfect. I couldn't help but admire his expert manipulation even as I resented it. "You said you came in from, was it Hector? They have Fragiles there, don't they. Tell me, would you have a problem working with meatsacks?"
"Meat?" I didn't have to feign surprise. "I don't think so . . ." I was about to volunteer my profession, but he focused on his desktop again, shutting me out.
"There's an opening for a ship-hand in the labor-exchange listing." Into which he was, of course, plugged, the better to earn his commission as a recruiter. "Let me see . . ." He referred to the desktop clipped to the wall beside him. "It's on board a religious vehicle—a chapel—that's en route to Shin-Tethys. It's not exactly a fast liner, but it's better than a minimum-energy cargo pod. They put in for repairs here because of some sort of technical trouble, and they've only just got it sorted out. Let's see . . . the requirement is for semi- or unskilled labor, but you need to be able to work in standard gravity, and more importantly, be of traditional bodily form, which rules out a lot of people. It's conditional on your satisfying the sailing master about your piety," he added by way of a warning. "I can't help you there. The interview is entirely up to you. They're supposed to provide training on the job. That'll be fifty dollars fast, refundable if you don't get the berth. Assuming you want it and can afford—"
"I do, and I can." It was cheaper than I could have hoped for, and I had no problem with the idea of a working passage; it would help avoid the tedium of a long-duration flight. Delayed by some sort of problem. Their misfortune: my profit.
I held out a hand and flashed it, allowing the numinous glow of hot cash to light up the chromatophores in the webbing between my fingers. "It's just the Church of the Fragile, yes? Pious worshippers tending to the holy flesh, keeping it from rotting as they fulfill their mission to the stars?"
"That's my understanding." He nodded. "That, and routine cleaning chores. They may be religious, but they're pragmatists. As long as you're not heretically inclined . . . ?"
"No, nothing like that!" Tending meat: In all our years, I don't think any of my lineage has ever done that. But beggars can't be choosers—not even mendicant scholars masquerading as beggars. We shook on the deal, and his palm flickered red, the escrow lock pulsing rapidly. "I'll just be going. If you'd maybe tell me where . . . ?"
"Certainly." He smiled, evidently pleased with himself, then passed me the coordinates. "You want Node Six, Docking Attachment Delta. The Blessed Chapel of Our Lady of the Holy Restriction Endonuclease is parked outside—in quarantine because of the meat. That's normal in such circumstances, you know. Ask for Deacon Dennett. They will be expecting you."
What I was unaware of:
I had a stalker.
Most people are autonomes; self-owning, self-directed, conscious. It is the glory and tragedy of autonomes that they experience the joy of selfawareness and the terror of the ultimate dissolution of self into nonexistence at the end of life. You are an autonome: So am I.
The stalker was not an autonome. Despite looking outwardly human and imprinted with a set of human memories, the cortical nodes within its skull were not configured to give rise to a sense of self. The person who sent the stalker believed that consciousness was a liability and a handicap that might impair its ability to fulfill its mission: to hunt down and kill me.
The stalker had a full briefing on me, but didn't know much about what I was doing in Dojima System, other than the fact of my arrival and its instructions for my disposal.
I later learned that my stalker beamed into Taj Beacon barely a million seconds after I did. We'd both been sent more than a decade earlier, via the beacon in high orbit around GJ 785: Our packet streams overlapped for months as the Taj Beacon buffered and checksummed, decrypted and decompressed, and finally downloaded two neural streams onto soul chips for installation in newly built bodies, paid for by the slow money draft signed and attached at the origin of our transmission. I awakened first, my new body molded to a semblance of my previous phenotype by the configuration metadata attached to the soul transmission. I completed the immigration formalities and left the arrivals hall before the killer opened its eyes.
While I was on Taj Beacon, I was unaware of its existence.
But I found out all too soon.
The travel agent's office was a fabric bag attached to one of the structural trusses that braced the vast, free-fall souk at the heart of Taj Beacon's commons. I really hated the souk; having gotten what I went there for, I ran away as fast as I could.
I confess to you that I lied to the travel agent about my assets. When I arrived, almost the first thing I did was to cautiously convert a couple of slow cents into fast money. I did it reluctantly. The best slow-to-fast exchange rate I could find here was usurious—I took a 92-percent hit on the public rate, never mind what a relative would have fronted me—but to up-convert with full and final settlement via the issuing bank would take nearly a billion seconds: It's not called slow money for nothing. I was not, in fact, sleeping on park benches and subsisting on raw hydrocarbon slurry: But I saw no need to advertise the fact that I had 7.02 slow dollars signed and sealed to my soul chips, and another 208.91 medium dollars at my fingertips. That much money walking around unguarded was an invitation to a mugging or worse.
Taj Beacon is and was the main gateway for information and currency flows entering and leaving Dojima System. It hosts multiple communication lasers, pointed at the star systems with which Dojima trades directly. As commonly happens, the burghers of Taj Beacon have a vested interest in maintaining a choke hold on interstellar commerce. Consequently, they scheme to prevent rival groups from establishing their own beacons. And so it is that, in addition to the high priesthood of financiers and factors who worked the banks and bureaux de change and bourse, the operations managers and engineers who maintained the interstellar communications lasers, and the usual workers you might find on any deep-space habitat, Taj is host to numerous loan sharks, grifters, labor brokers, and slavers.
I was traveling alone, and my only contact in the entire system had gone missing—so to say I was isolated would be an understatement. Under the circumstances, drawing attention to myself by flashing my assets seemed like a really bad idea. I therefore lived cautiously, using anonymous cash to rent a cramped arbeiter's pod in an unfashionable high-gee zone, going through the public motions of seeking employment, trying to remain inconspicuous—and meanwhile looking for a ship out of this festering sinkhole of villainy.
As for the souk: Some combination of the disorienting lack of local verticalia, the density of bodies, the shouting of offers, the mixture of smells, and the fluctuating hash of electromagnetic noise combined to make me claustrophobic whenever I had to visit an establishment there. But what really got to me was the advertising.
The souk is a public space. Unless you pay up for a pricey privacy filter, every move you make is fodder for a thousand behavioral search engines, which bombard you with stimuli and monitor your autonomic responses in order to dynamically evolve more attractive ads. Images of desire bounce off blank surfaces for your eyes only, ghostly haptic fingertips run across your skin, ghostly lascivious offers beam right inside your ears. Are we getting hotter? Colder? Does this make you feel good? I didn't want to draw attention to myself by excessive filtering. But I wasn't used to the naked hard selling: My earlier life hadn't prepared me for it, and the ads made me feel bilious and love-stricken, invaded and debauched by a coldly mechanical lust for whatever fetish the desire machines were pushing at their victims at any given instant. The mindless persistence with which the adbots attempted to coax the life-money from their targets was disturbing. Though I hadn't been on Taj long, I had already learned to hate the sensation. The soul-sickening sense of need ebbed and faded from moment to moment as I moved from one hidden persuader's cell to the next, leaving me feeling vulnerable and friendless. Alienated? Friend-lorn? Desirous of luxurious foods or eager prostitutes? We can torment and titillate until you pay for sweet release . . .
Beacon stations are the choke points of interstellar trade, positioned to extract value from the slow money of the dissatisfied and the desperate as they pass through the network. Taj Beacon is the worst I've ever visited, possibly a holdover from its foundation in the wake of the great Atlantis depression, over two millennia ago: The result is a frenzied vortex of dionysiac capitalism presided over by a grasping, vicious plutocracy, boiling and churning in the frigid wastes on the edge of the star system. All because the beacon lay in the trailing trojan point of the innermost gas giant, between the outer belt and hab colonies and the populated inner system that generated the traffic. Taj's founders were in the right place at the right time, and they and their descendants took it as a de facto license to seek rent.
Surviving the barrage of ads with my sense of purpose intact and my purse unravished required self-discipline and a willingness to shut down my facial nerves and chromatophores completely—and preferably to shut my eyes and ears as well. Counting features of the ads helped me ignore the content; I kept tally of the products, descriptions, and associated emotional cues as I pushed through, as a tenuous gesture of defiance. (Eleven ads, averaging six iterations per minute, in case you were wondering.) And, after far too long, I managed to make my escape into the civilized low-gee suburbs, then back to my cheap, rented, capsule apartment.
Calling it an apartment is, perhaps, an exaggeration. A cube of nearly thirty meters' volume, it held my bed (a blood blue cocoon purchased from a thrift store), a couple of changes of clothing suitable for different social contexts, a two-meter retina with a ripped corner that I'd rescued from a recycler and tacked to one wall for visualizations and entertainment, a ready-packed bag in case I had to leave in a hurry, and a crate where I kept my feed. I'd visited worse slums, but not often and never to live there by choice.
On the other hand, there was nothing here to attract the attention of my neighbors. Most of the other residents were laborers or fractional-reserve servants of one variety or another: poor but sufficiently respectable not to attract the attention of the secret police. (Not that the SPs cared about anything except direct threats of sedition or subversion that might impair their patrons' ability to keep their salaries flowing. Accept capitalism into your heart, and you were almost certainly safe, except for the occasional unfortunate case of mistaken identity. Yet another reason not to dwell here too long . . .)
I flopped back onto my bed and waved at the retina. "Any mail?" I asked halfheartedly.
"Good evenshift, Krina! I'm sorry, there's nothing new for you today." I'd given it an avatar, the facial map and mannerisms of my sib Briony—but left the eyes empty, to remind me there was no person behind them. "A communiqué from your cousin Andrea"—a sib of another generation from mine—"is buffering now and will be complete within two thousand seconds. Price of release is thirty-two fast. Do you wish to accept?"
I swore under my breath—not at the retina, lest it misinterpret. But rent-seeking intermediaries with a monopoly on interstellar commerce would have been a good candidate for the bane of my life had they not also become the source of my income (by a cosmic irony that I no longer found even remotely humorous). In this case, the station's official receiver had decided that Andrea's incoming message was inconveniently large, or that the exchange rate since its transmission began (at least twelve years ago, assuming she was still back home) had fluctuated sufficiently to justify levying a supplementary fee. In any event, what was I going to do? I could pay the additional service fee or miss the message. Which might be something as banal as a we're all missing you, come home safe and soon or as vitally important as word that my entire multiyear mission was pointless, that the long-lost property had been picked up by a rival syndicate.
"Accept and debit my account," I said aloud. I paused to update my expenses sheet and stared gloomily at the dwindling cash float: Today was turning out to be very costly indeed. "Have there been any more responses to my primary search?" I asked the retina.
"No new responses!" I winced. I'd spent another chunk of fast money a week ago, buying a broadcast search—not merely of Taj Beacon's public-information systems, but propagated systemwide—for news of Ana. Who had now been missing for over a hundred days, since shortly after I began to download into the arrival hall's buffers—a suspicious coincidence, in my view, given that she had lived in the same floating city on Shin-Tethys for over twenty years. "Three archived responses. Do you wish to review them?"
"No." I had them off by rote memory: One anxious inquiry from an out-of-touch friend of Ana's (I think an ex-lover); a request for an interview from the local police (doubtless wondering why an out-system visitor was interested in a missing person); and a debt-collection agency wondering who was going to pay the rent on her pod. It was depressing to think how faint the mark she'd left behind must be, that so few people were interested in her disappearance. (Much like me, in fact. Loneliness is our only reliable companion when we fish the well of time for magic coins.) "Download and archive Andrea's packet in my second slot as soon as it's available." A thought struck me. "Transaction with M. Hebert, travel agent: labor-exchange placement. When does it time out?"
"Your offer closes in four thousand four hundred seconds! Placement vessel preparing for departure!" My retina chirped.
What? The agent didn't tell me it was leaving so soon! I looked around my cube in a momentary panic, then realized there was virtually nothing here that I couldn't replace easily enough. I grabbed my go bag, already stuffed with a spare change of clothes and a palm-sized retina: "Dump Andrea's packet into my number two soul chip as soon as you've got it, then erase yourself," I told my sister's hollow-eyed face on the wall: "I'm out of here for good."
An hour later, I arrived at a docking node in an old part of the station. It was all grubby metal and delaminating anticorrosion treatments, the lights flickering, ventilation ducts howling mournfully behind rattling panels. Fat umbilical trunks snaked between nodes and across exposed walls, floors, and ceilings, their papery shrouds rippling in the breeze: Odd gelatinous globules hang quivering from leaky pipes, their surfaces fogged and filthy with trapped dust and fluff. There was a marked lack of life in this place, a sense that here the bones of the world were showing through the skin.
I found myself afloat in the middle of a desolate six-way crossroads. It took a few seconds for me to compose myself before the next step. At times like this, I have always been susceptible to a weary, familiar dread. I was on my own here; if Ana was dead (as seemed likely), I was the only one of my kind in this entire star system, and my generation in my lineage is not one that is comfortable with solitary working. I'm a creature of habit and a team player—by design. I'd been up and alive on Taj Beacon for around a million seconds: time enough to develop a routine, even as a near down-and-out in an unfriendly and highly competitive realm. And routines are comforting. It would be easy to stop moving and stay here. I was achingly, numbingly tired of constant motion. Sometimes it felt as if I'd been traveling and studying and covertly searching forever, as if I'd been built to run down darkening corridors in beacon stations across the whole of inhabited space, driven by hallucinations and night terrors from the wrong side of the balance sheet. The darkness behind me was gaining, filled with the terrible fear that I and my closest sibs had been set up to be the targets of a killing joke of monstrous dimensions. Or perhaps just a killing. There was, quite clearly, no turning back—but I was deathly tired of going forward.
I made a conscious effort of will to get moving again, drawing deep on the reserves of determination held by the bank of Krina. I had long since anthropomorphized my regular doubts into familiars (for the only friends I had to talk things over with were imaginary). No Payoff At The End Of The Tunnel shuffled behind me and stared at my back with starvation-dulled eyes. In Too Deep rode on my shoulder, hunched and squinting suspiciously at every anomaly. Moral Hazard flew ahead of me on wings the color of bonemetal, occasionally turning its head to mock me over its shoulder. I did my best to ignore them: They were along forthe voyage, but I was determined to chart our course without reference to insecurities. So I forced myself to kick off, diving headfirst into the shadowy recess of the air lock connected to the docking node above me, imagining them trailing behind.
The air lock was a dingy cylinder with no obvious exit: just a hand wheel protruding from one wall, some grab rails, and a sign on the dead end opposite the entrance that said YOU ARE NOW LEAVING THE PRESSURIZED ZONE. I braced myself and turned the wheel. The entrance to the air lock narrowed as the cylinder rotated around me. As the solid, curved wall drifted across the entrance to the air lock, a mournful whistling began: A mesh of holes slid into view, venting into a cold trap to reclaim the valuable gases. When I felt the pressure drop in my vestibular machinery I stopped cranking and waited for silence. Then I turned the wheel again and kept turning until the air lock finally rotated far enough to show me the other doorway—the one that opened onto the unwinking starry darkness of deep space.
Space walking is dangerous, but the mooring crew had made adequate provisions: They'd fused no less than three brightly colored ribbons to the outer grab rail beyond the air lock, glowing merrily in the floodlit glare of a portal embedded in the chapel's belowground service structures, some twenty meters away. There was a harness and pulley attached to the nearest tape. I blinked to shatter the film of ice that had crusted over my eyeballs, then grabbed the harness and fastened it around my body, looping it through the strap of my bag. A minute later I fell headfirst through the violet-glaring hoop of the chapel's air lock. The light was cast by ultraviolet sterilizers. I knew what that meant: On the other side of this air lock, there was meat. Living meat.
Award-winning British author Charles Stross has become a force to be reckoned with in recent years as his profile continues to grow. He is seen as go-to commentator on all manner of SF and technological issues, he's vocal online and incredibly well connected. He has also had fantastic critical acclaim for his intelligent and often witty SF works. Charles was born in Leeds, England, in 1964. He has worked as a pharmacist, software engineer and freelance journalist, but now writes full-time. You can find his popular website at http://www.antipope.org/.
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