An Open Letter About Autism Acceptance to Pope Francis from Amy Sequenzia

Dear Pope Francis:

I think I am supposed to call you “Your Holiness”. I am here to teach you some important things about autism, about being Autistic, and about Autism Speaks.

You recently met with Suzanne Wright, co-founder of Autism Speaks, and your lack of understanding about my neurology and about who I am makes it look like you don’t care about social justice.

Yes, I am Autistic, Disabled and proud.

I don’t want pity.

I don’t need Ms. Wright’s hateful words.

Autism Speaks does not speak for me.

I will use her speech to teach you and show why cure and prevention of autism go against my human rights.

I will “translate” the speech, I will tell you the real meaning of Suzanne Wright’s words.

First, you need to know what Autism Speaks really stands for: hate.

Autism Speaks raises money by demonizing people like me, and by martyring parents, as if parenting Autistics is a burden, and a tragic living.

Autism Speaks also ignores Autistic adults, people like me, very disabled and very proud of my neurology.

Now, the speech.

Suzanne Wright starts by saying autism is a health crisis.

Wrong. We are not diseased or disordered. Autism is our identity, like the color of our skin. Is there a “black people health crisis”? An “Asian health crisis”? I think you get my point.

She says that “autism families” suffer. She can’t even use the correct words. Autism families are only a thing if all the members are Autistic.

The only suffering comes through her hateful rhetoric and stigmatization.

What she really meant was that in her distorted view of autism, all Autistics cause suffering to non-autistic family members. See how she does not see us as sentient beings?

Then she talks about how everyone is tired of us, the extreme work for no reward. She does not sound too concerned with her faith. Doesn’t the Catholic Church teach that heaven is for the poor and humble?

She mentions the lack of information about autism, purposefully leaving out how Autism Speaks, under her guidance, misinforms the public.

She briefly mentions her grandson, trying to paint him as pitiful. Well, I am an adult with a lot of needs and my friends say I am pretty awesome.

Suzanne Wright not only diminishes Autistic people’s experiences of the world, she also shows her ableism toward people who have Hansen’s disease, referring to them as lepers.

To her, we are to be viewed as undesirable, unapproachable, not to be touched, while our parents are saints, doing (according to her) the ultimate act of love a parent of an Autistic person can do: look at us.

This is a very messed up statement, from a supposedly loving grandmother.

To Suzanne Wright, Autistic people do not deserve appreciation or respect for just being. We are only to be valued if we can be, act and look “less autistic”.

Then, she calls us not human enough. She states that we don’t learn, worry, rejoice, live. She decided that our dreams and wishes are unimportant and not worthy of anyone’s attention.

What Suzanne Wright says her organization does is simply a lie. The truth is that Autism Speaks uses only 3% of the donations it receives to help Autistics and their families. Autistics adults are not even considered by the organization. Most of the money raised is to enrich executives and to find a genetic marker, with this objective: selective abortions. And she brought St. Francis to the conversation. How can the Catholic Church reconcile it’s rejection of abortion, yet allow a speech from someone whose mission in life is to find a way to, through selective abortion, make sure people like me do not exist?

The isolation, harassment, shame and disgrace she mentions should be spelled out as the mission statement of her organization, since that’s what Autism Speaks engages on with full force.

The blue light she talks about? It magically turns into green dollars, used in propaganda that demonizes us, martyrs our families, and ignores our voices. Propaganda like her speech to you.

The lies about how she really feels about us don’t change the reality of what her organization promotes: her “village” is not welcoming to, or safe for us, Autistics who just want to be, to exist.

Suzanne Wright lacks humbleness. She believes that she is on a mission to rid the world of autism, of Autistics. She does not listen to the many Autistics saying that our lives are worthy, that she is wrong and hurtful. But her goal of portraying autism as a devastating disease, of portraying Autistics as less than useless human beings, is advanced by her savvy marketing skills. She uses fear to spread hate – packaged as compassion – and she uses her wealth to gain access.

She gained access to you, dear Pope Francis.

She spread her lies, disguised as a call to love.

You now know the truth, easily confirmed by how she directs her organization.

I am Autistic, Disabled and proud.

I know what autism is.

Your Holiness, are you going to silence me? Are you going to deny my wholeness, my perfect humanity, as imperfect as all humans are, still deserving of a life free from hateful attacks?

Suzanne Wright has an agenda and it goes against my right to exist.

What are you going to do in support of my right to be, just as I am?

What are you going to do about all Autistics right to exist, just like we are?


 

"We Cannot Stop" by Amy SequenziaAbout the Author, Amy Sequenzia.

 

 

 

16 thoughts on “An Open Letter About Autism Acceptance to Pope Francis from Amy Sequenzia”

  1. As an artist on the autism spectrum, I support your response Amy. We cannot let them abort us and a final solution. I know for a fact that if there had been a test that showed markers autism in my pre-birth, I would of been an abortion, especially in light of my fathers remarks and attitudes about ‘weaknesses, defects”. I would not be and neither would my spiritual art and painting.

  2. Thank you for your advocacy and self-advocacy. I have a daughter who is autistic. We resist ‘intervention’. We struggle to change ourselves, to modify our own behaviour and thinking so that we can celebrate and appreciate the perfect, interesting, loving, love-able WHOLE human that she is.

  3. Pingback: Autistic Activist Amy Sequenza to Pope Francis: “Autism Speaks Does Not Speak for Me” | The Digital Hyperlexic

  4. My wife Beth is disabled. She is not sick needing to be healed, or broken needing to be fixed, she is just differently-abled. She is in a wheelchair with Spina Bifida. I tease her and tell her she’s only disabled when its to her advantage … like finding parking at busy stores. 😉

    YOU are just differently-abled as well, and knowing how to work with that ability does indeed make you awesome!

    1. Please don’t use the Abelist Term “differently Able”, Autism is a disability. Disability is a part of our Identity. Thanks. Also Amy Amazing letter! You’re Beyond Awesome! Good Luck and God Bless You! Fellow Autistic, Disabled Autistic and Proud! Rock On Girl!

  5. Pingback: » El Papa Francisco, el Autismo y la verdad sobre Autism Speaks. eita.pe

  6. I was in contact with the Permanent Mission of the Holy See to the United Nations and other International Organizations in Geneva, Switzerland, prior to the conference taking place. I had been aware of this conference since it was announced at the World Health Organization’s World Health Assembly in May 2014, but I wasn’t able to persuade them to invite autistic self-advocates as speakers. I never even received a reply from the Pontifical Council for Health Care Workers (for Health Pastoral Care) who organized the conference. I just now forwarded a link to Amy’s post to Monsignore Richard Gyhra, First Secretary of the Permanent Mission in Geneva who at least responded to an earlier e-mail. I cc’d it to the Pontifical Council. I also informed them that personally I have as a consequence of this conference left the Catholic Church.

    1. Hi Erich,

      Wow, I respect you for taking these huge steps in practice of appropriate self care. This takes so much energy and self’love. I hope you are feeling good about this self care.

      I did similarly back in the 1990’s, when those in the upper rungs of a religious order demeaned and abused me for ‘not being willing to cowtow to all their distrespect of me and others who obviously were different.

  7. Hopefully your words will be considered by the Pope and by our bishops. I am finishing my dissertation on the subject and have discovered profound spiritual gifts in those with autism that have led me to urge the bishops to reconsider the way they view autistic people as defective and to consider their presence in this world as a gift from God to teach the world how to love and find Him. I have already quoted you and several other autistic people, honoring the “nothing about us without us” pledge I made to the Autism Advocacy Network but I have also discovered through my four years of working with autistic adolescents in preparation for the Sacraments of the Catholic Church that they have some amazing abilities to “feel” the presence of Christ in the Eucharist, their abilities to contemplate and their gifts for laser focus truth.

    The problem seems to be a matter of perspective. Autism Speaks views autism as a defect. I submit the change of viewpoint from defect to one of diversity, much as the Church views culture. The Church views different cultures as relevant and important, and autistic culture is no different. Your culture includes unique ways to celebrate life and express those experiences. The Church could benefit by taking a position of neurodiversity rather than viewing autism as a pathology to be cured. You have special gifts this world needs right now. Never forget that Amy!

  8. Except that for every high functioning Autistic person, there is a child like my little girl. A child who will be vulnerable for the rest of her life. A child who is still in nappies at six, who cannot speak, whose disabilities are profound. I dread the day I leave this world and she’ll be all alone with no one to fight her corner. Who will help her? You? Your sanctimonious mates? My beautiful daugher was child who at fifteen months showed so much promise and engagement with the world,. At two was locked in, shut down, miserable, in pain, and had lost her mind. Every day I push the boulder of my grief up that hill, and watch it roll back down again. She will never be okay, and neither will I. I will die young, and probably she will as well given this cruel and compassionless society we live in. Don’t fucking SPEAK to me about martyrdom.

    High functioning autistics, in their efforts to promote acceptance of their condition—which is important—must be very careful not to dismiss the devastation this can cause to some families. Regressive autism is a devastating condition for many many people, my little girl and myself included. Recognising that pain, acknowledging it, is not hate. You don’t hate someone with a broken leg or a limp. Hate speech doesn’t work that way. Many parents of severely disabled children, especially if the autism is combined with learning disabilities or severe communication disorders—suffer from chronic mental ill-health themselves. Many are suicidal, exhausted, broke, and cannot see an end. And you call people who recognise their pain ‘making martyrs’ out of parents? With respect: that is a cruel and heartless statement to make. It dismisses the experiences of these people many of whom outpour love and acceptance onto their children, spend years fighting for support for thier kids, break their backs in physical care.

    How dare you dismiss them.

    You’re autistic. Fine. You’re proud of who you are. Not a problem.

    But don’t you DARE condemn parents who are suffering. Don’t you DARE minimise or dismiss what they go through. Don’t you dare toss aside their mentl and physical ill-health that often leads to disability as profound as the child they care for. That is immoral, unethical, and miserably unfair. There are many kinds of autisms. It isn’t one phenotype. It isn’t the same for everyone. I’m seeing more and more of this kind of parental condemnation, as if fighting for our children meant we didn’t love them or accept them. As if feeling grief or pain or suffering means we do not love. Screw that. If we didn’t love, we wouldn’t feel the pain.

    How DARE you dismiss us in this way. Having autism yourself does not give you the right to dismiss my daughter’s suffering or my own.

    I’m not dismissing your experience or identity. You are dismissing mine.

    1. Hi Clara,
      I greatly respect the love and devotion you have shown your child. While it may seem Amy is “high functioning”, she has struggles not unlike your daughter. The difference may be a matter of time. One thing my research and studies in Autism have shown me is the developmental curve seems to correct somewhat at age 11 or 12. While every child is unique, many children make monumental advances in adolescence. Often, their ability to communicate improves astronomically during this time when they are given the right technology to do so. I believe this is often the norm, not the exception. Of course, every person is different and, as they say, when you meet one person with autism, you know … one person with autism. However, if you are knee deep in childhood, you are going through the most intense part of the storm. You sound overwhelmed. I remember those days. Thank God they are different now. You need support and while the emotions Amy expressed on this page are certainly her own, they are not always representative of all people with autism. In fact, I would bet the emotions she expressed here are just a fragment of the emotions she feels. For example, I have seen her write about her gratitude towards her parents for their support and love. I don’t think she is critical of parents. I can’t speak for her (she writes for herself quite well.) However, I would say she seems to be not unlike anyone her age in her situation. I have clients who are young adults with autism and their desire for independence and autonomy are consistent with any other young adult. It seems the presumption of their intellect is often based on their ability to speak and, when they can’t speak, they are pre-judged as having the intellect of a 4 year old. I have yet to work with an adult with autism who are no prejudged based on their speaking challenges. However, I have found amazing gifts and abilities in those with neurological challenges that far surpass the typical person. When God takes something away, He always gives some other gift. Our job, as parents, is to fight our kids’ corners until that those gifts are known to the world and appreciated. Amy has a strong sense of justice and she is completely unafraid to stand up for the rights of those she sees as being marginalized by society. That is a wonderful gift to this world. Sometimes it can appear as being resentful or bitter towards parents. I don’t know if she means this, but if she does, it might be understandable given her struggles. Her life journey may not be in the same place as yours, so she may not have the same perspective as yours. It is good that you express your feelings. It is good she expresses hers. Neither is right or wrong. They simply are. The trick is to look at them together and see where the two perspectives may have common ground. You both are fighting for the dignity of those with autism. That is a courageous and noble effort. I applaud you both. I know it is something my clients greatly appreciate.

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