No, I don't know either, but it brought me up short to realise that a condition I live with* can now be selected as a reason for aborting foetuses. I suspect that's what the Down's syndrome person asked felt too.
On that list of disabilities to be investigated at 20 weeks gestation is spina bifida - Tanni Grey-Thompson has spina bifida (although I don't know which form she has.)
* There is no genetic test for hEDS, although there is for cEDS and vEDS. I have the mildest version very mildly and don't reckon to be disabled, although I know others who are disabled by hEDS. I watch rhythmic gymnastics and wonder how many of the competitors have hEDS to be that flexible.
On another level, ordinary kids can get aborted too, for any reason.
And I've heard that one both ways: "I wouldn't exist if rape was a reason to be aborted because my dad was a rapist" and "I wouldn't exist if abortion were banned because my mom avoided being stuck with an abusive asshole by getting an abortion."
The real trouble is the future in anyone's life is an unknown. There is an awful lot of random stuff that goes into any one person's life, quality of life; disability is a big factor, but it's only one. And some things can weigh heavier than it, depending on the disability.
Another dark observation, I work at a facility for disabled adults, and it's a lesson that they started out as a "hospital for unwed mothers." They turned into a facility for kids with disabilities because they found that nobody would adopt a kid with very visible disabilities; they just started accumulating these kids and decided that they had to take care of them.
I'm not sure, am just trying to work this out. Is there a difference between saying:
this pregnancy is a disaster: it's the result of rape and I cannot face nine months of carrying the results of that assault, or I cannot afford a(nother) baby, or my body cannot cope with another pregnancy this close to the last, or this pregnancy is not planned, the father is not around and I really did not mean to fall pregnant ... (I'm sure I can think of other reasons) - so aborting a pregnancy in the first trimester, (remembering that 58% of those having an abortion in England and Wales in 2020 already had had a child or stillbirth previously).
or
well, I wanted to have a child, planned to get pregnant, but I've found out that this foetus has a high risk of being Down's Syndrome / having spina bifida / sickle cell disease / other condition on a long list on the pre-natal screening list/ so this pregnancy is now a disaster and I am going to have an abortion?
Of course, if you are against abortion either is unacceptable.
I do think selective abortion is an ethical issue, but also that the counselling about what a disabled life might be at point of prenatal detection is of very poor quality.
How could it be done better?
And this is coming from a guy who sincerely isn't sure how to answer that question himself.
I am not sure. I wonder if getting some people with the various disabilities concerned to write or dictate an account of what their life is like (and/or their parents) with a list of FAQs - that could be provided offered to a prospective parent to read if they would like to, would be a start.
If you have little experience of disability, then it may be difficult to imagine the ways in which people manage their lives. And if you work mainly with parents and infants, you are unlikely to have an extensive knowledge of what support, assistive technology and opportunities that are out there for adults with disabilities, the funding and frameworks available.
If you have little experience of disability, then it may be difficult to imagine the ways in which people manage their lives. And if you work mainly with parents and infants, you are unlikely to have an extensive knowledge of what support, assistive technology and opportunities that are out there for adults with disabilities, the funding and frameworks available.
Respectfully, if you're not in the US, you may overestimate what supports we have in this country. In some states or counties, none at all for a person of small means.
Yes, my apologies - I was reflecting on the U.K. context. But even so, I think having that material provided, specific to the society in which you are living, would be helpful.
Indeed. A single disabled adult who has never worked gets $794/month from the federal government. Some states supplement that; California brings it up to a total of $954.72, $1011.23 for blind people. These folks are also generally qualified for Medi-Cal, which is subsidized healthcare, and for food stamps. But studio (i.e., one room plus bathroom) apartments in my city go for over $1000. There are Section 8 vouchers - government subsidies for rent - but the waiting lists to get into places that accept Section 8 are miles long. According to The Arc,
Approximately 4.8 million non-institutionalized people with disabilities who rely on federal monthly Supplemental Security Income (SSI) have incomes averaging only about $9,156 per year – low enough to be priced out of every rental housing market in the nation.
And that's not even getting into accessible housing, home healthcare assistance, the cost of something like a motorized wheelchair, or how difficult it is to navigate the system when there is assistance for paying for such things.
And ... that's talking about people who can basically take care of themselves, given the proper benefits. Over 6 million people in the US care for disabled adults age 18-49.
Caregivers of younger adults ages 18–49 spend 32.5 hours a week, on average, providing care—more than caregivers of older adults (22.3 hours a week). This time is spent helping their recipient with an average of 1.5 Activities of Daily Living (ADLs) and 4.5 Instrumental Activities of Daily Living (IADLs), with 50 percent helping with medical/nursing tasks.
...
[H]alf of caregivers of younger adults are completely alone, providing care without any other unpaid or paid help (52 percent) ....
When it comes to financial effects, caregivers of younger adults are particularly strained. One in 3
caregivers feel high financial strain as a result of providing care to his or her younger adult recipient
(34 percent), up significantly from 22 percent in 2015. Many are also experiencing negative financial
impacts due to caregiving, reporting 2.8 impacts, on average; more so than caregivers of older adults
(1.5). Two in 10 have been unable to afford basic expenses like food (21 percent), twice as many as caregivers of older adults (10 percent). Six in 10 caregivers of younger adults have worked in the past year while providing care (59 percent), though they more often than caregivers of older adults experience work impacts like cutting back hours (23 percent vs. 14 percent), turning down a promotion (14 percent vs. 6 percent), and giving up work entirely (13 percent vs. 5 percent).
In short, it's incredibly hard in the US to care for someone who will be significantly disabled their entire life, and I don't blame anyone at all who takes that into account when deciding whether to carry a child to term or not.
They don't necessarily get adopted. They go into foster care, and a lot of them stay there.
There are up to 134,000 children with “special needs” awaiting permanent homes, according to the National Adoption Center, and the demand is growing. In the context of foster care and child welfare, “special needs” refers not only to a child who has disabilities, but to children whose risk factors for disability, age, racial or ethnic background, or other characteristics often make them more difficult to place.
However, it has been estimated that up to half of the children categorized as having “special needs” have a developmental disability (Adopting a Child with a Developmental or Chronic Disability, by Martha Henry and Daniel Pollack). In addition, it’s estimated that 60 percent of all children in out-of-home care have moderate to severe mental health problems, and adolescents living with foster parents or in group homes have about four times the rate of serious psychiatric disorders of those living with their own families (A Special Case for Children with Special Needs, by Lacey Mickleburgh).
I'll add: I've known a bunch of people who have adopted children. I've known exactly one couple who adopted a severely disabled child.
Plus (and I'm sure you weren't implying otherwise) adopting a non-disabled child can have huge difficulties, because it's pretty rare for children to be up for adoption unless their home life was dire, so it's not like adoptive parents of non-disabled children are picking the easy option.
Funnily enough, I also have hEDS - like autism and ADHD, EDS generally is one of those things which seems to be particularly comorbid with being transgender, and EDS and being an AFAB (assigned female at birth) person with ADHD seem to be strongly connected. Many UK surgeons who hold NHS contracts for trans surgeries are developing specialisms in surgery on patients with forms of EDS because of the apparent links (it affects healing and also sensitivity to sedatives, as does ADHD in the latter case).
All this to say that I am very acutely aware of the problems around testing for disabilities and the ethics of abortion in that case. For me it comes down to issues like those @Ruth talks about within the US, but the UK is honestly not a great deal better. We've all heard the PIP and UC horror stories. Now throw a baby into that mix, and that's without talking about the increased risk of post-partum mental illness including post-partum psychosis. It's not that I don't think ableism with regards to abortion is important, but that there are a thousand more important discussions about ableism in society to be had first. People refuse vaccines so their kid doesn't end up like me, it's not a neutral issue for me either - but people wouldn't end up in that place of being terrified of having a disabled child if society wasn't built on institutional ableism in the first place. Pregnancy and childbirth already put anyone experiencing them at a huge economic and societal disadvantage, so I'd rather not negatively target those things first. On the contrary, things as basic as longer and better-paid parental leave would make an enormous difference especially in the US.
I'll add: I've known a bunch of people who have adopted children. I've known exactly one couple who adopted a severely disabled child.
Plus (and I'm sure you weren't implying otherwise) adopting a non-disabled child can have huge difficulties, because it's pretty rare for children to be up for adoption unless their home life was dire, so it's not like adoptive parents of non-disabled children are picking the easy option.
Indeed they are not! And even when you adopt an infant, as my best friend did, you generally face issues you simply don't have with a child you birthed.
... but people wouldn't end up in that place of being terrified of having a disabled child if society wasn't built on institutional ableism in the first place.
Things would certainly be better without ableism, but having known people who were caring for a teenager who was functionally like an infant, I think I'd be terrified at the prospect of being responsible for such a person's care.
from the NHS website (link) as well as known inherited diseases, there are a number of conditions screened at 20 weeks:
The 20-week screening scan looks in detail at the baby's bones, heart, brain, spinal cord, face, kidneys and abdomen.
It allows the sonographer to look for 11 rare conditions. The scan only looks for these conditions, and cannot find everything that might be wrong.
anencephaly
open spina bifida
cleft lip
diaphragmatic hernia
gastroschisis
exomphalos
serious cardiac abnormalities
bilateral renal agenesis
lethal skeletal dysplasia
Edwards' syndrome, or T18
Patau's syndrome, or T13
There is information about all those conditions as links in the article.
The scan may "only" look for these, but will inevitably spot other anomalies. Our baby fell within the "lethal skeletal dysplasia" category, but at 20 weeks it looked as though he had non-lethal achondroplasia.
A woman with Down’s syndrome who took Sajid Javid to court over the UK’s abortion law has lost her case in the high court.
Heidi Crowter, who brought the case alongside Máire Lea-Wilson, whose son Aidan has Down’s syndrome, and a child with Down’s syndrome identified only as A, had argued that allowing pregnancy terminations up to birth if the foetus has Down’s syndrome is discriminatory and stigmatises disabled people.
The judges said:
Lord Justice Singh and Mrs Justice Lieven said: “The issues which have given rise to this claim are highly sensitive and sometimes controversial. They generate strong feelings, on all sides of the debate, including sincere differences of view about ethical and religious matters. This court cannot enter into those controversies; it must decide the case only in accordance with the law.”
(I'm not sure where the solicitor got the figures for late abortions broken down, because they are not in the abortion statistics. Under Ground E, that the child will be severely disabled, yes, Down's Syndrome accounts for the largest group, but most of those abortions are not late term.)
I'll add: I've known a bunch of people who have adopted children. I've known exactly one couple who adopted a severely disabled child.
I might've mentioned this before, but my employer is a campus that provides housing and permanent care for disabled adults.
They started out as an adoption agency, back in the day, and noticed that they accumulated disabled children because it was extremely rare that anyone would adopt them.
No disrespect to people who adopt, I know some, and it's hard even under good circumstances.
Things would certainly be better without ableism, but having known people who were caring for a teenager who was functionally like an infant, I think I'd be terrified at the prospect of being responsible for such a person's care.
Yes. That is what my employer is about, and the population I work with are, basically, infants to toddlers. Many of them are older than I am.
The existence of this field of work is clear evidence that many parents are not up to the task, even under "good" material circumstances.
I'll add: I've known a bunch of people who have adopted children. I've known exactly one couple who adopted a severely disabled child.
A couple we know could not have children of their own. They deliberately adopted 2 disabled children, saying that they were in a position where they could care for them.
Things would certainly be better without ableism, but having known people who were caring for a teenager who was functionally like an infant, I think I'd be terrified at the prospect of being responsible for such a person's care.
Yes. That is what my employer is about, and the population I work with are, basically, infants to toddlers. Many of them are older than I am.
The existence of this field of work is clear evidence that many parents are not up to the task, even under "good" material circumstances.
While I agree with the general thrust of this comment, disabled people including those with intellectual disabilities and neurodiverse people are generally opposed to 'functional' labels - ie, saying that a disabled adult is 'functionally' a toddler, or that eg an autistic person is 'high functioning'. With the former example, the issue is that this terminology is often used to deprive disabled people of their rights even when they clearly have the capacity to express their wishes - and it also contributes towards the infantilisation of disabled people, and the very poor support for disabled adults. The preferred terminology is 'high needs' or 'high intervention' or 'complex needs'. It also doesn't exactly help disabled people with their specific needs - saying that a disabled adult is functionally a toddler means that their actual adult needs like eg gynaecological care or prostate exams are shied away from or considered somehow obscene. This is also part of why disabled people get really substandard sex and relationships education, even though the children that abled people consider them to resemble are getting sex ed in school.
Roughly half of couples don’t even know what anomalies a scan might reveal before they get a diagnosis. But Fisher believes the problem is not just a lack of public awareness. “Sonographers say: ‘If only they had better information, it would be all right.’ It wouldn’t be. Everyone is completely shattered by the reaction they have. We get a lot of calls from women who are really shocked by how shocked they feel. They feel like it undermines the unconditionality of their love. That it’s still their baby. That they should still love it. There are women who feel like their whole identity has collapsed.”
Roughly half of couples don’t even know what anomalies a scan might reveal before they get a diagnosis.
When we were told our baby was a dwarf, I didn't even realise that was a diagnosis. I thought it was just a synonym for "small for dates." There was a very big penny-dropping moment when I realised, a couple of days after being given the diagnosis!!
I had been told that I was going to get a Doppler scan, and I looked up "Doppler" in the index of a medical textbook. Just below "Doppler" in the index was "dwarfism" and I thought "that's odd, the non-medical term the consultant has been using is in this book." And then I realised.
I knew about Down's, obviously, and some of the Trisomies, and obviously I'd seen people with dwarfism, but it never occurred to me that dwarfism was a condition which might affect a child of mine.
As a measure of how little I knew, the only fact I could think of was that the actor inside R2D2 in Star Wars was a dwarf, and so I started my research in the Star Wars section of the library. This turned out to be a good starting point because I discovered that Kenny Baker, the R2D2 actor, was married, with children, and clearly hadn't been held back by his condition.
If I'd realised during the hospital appointment that "dwarf" was a diagnosis, and had asked questions then, the initial information might have been more clinical and negative, and less "a glittering career in Hollywood awaits!"
The preferred terminology is 'high needs' or 'high intervention' or 'complex needs'.
These terms communicate almost nothing to a general audience, however. @Bullfrog's description - that the people he cares for need similar levels of care and have similar capabilities as infants and toddlers - communicates clearly the level of challenge that would be involved for a parent who might have adopted one of them as a small child.
Most people know roughly what a toddler can do, so Bullfrog's description is calibrated to something that almost everyone can relate to. "High needs" could mean almost anything.
So whilst I get what you're saying, I think Bullfrog's use communicates much better. Is there a phraseology that you think could satisfy the need both to respect the language that you say disabled people prefer, and communicates what Bullfrog wants to communicate to a general audience?
I also think it's a Pond difference as to what is acceptable terminology for disabilities, within professional spheres. It is also an ever moving target as each time a phrase becomes an insult, so something else is chosen as acceptable, the insults change.
The problem with any words we use is that they change meaning: it didn't take long for the school terminology of "special needs" to reach the playground as an insult: "He's speshul, he is!"
Hosting
Hello, let's not go down a tangent away from the topic (abortion) of this thread. It could make a good new thread to discuss terminology though!
But in the meantime -
Reminding posters that this is Epiphanies and sensitivity around preferred terminologies is really important. To post on topics here, please take the time to find out what is the currently accepted terminology used in your region by those most directly affected and especially what those most directly affected prefer.
As Curiosity says it can be 'an ever moving target' - things change all the time, so what people were taught can swiftly go out of date.
It's also a global board so terminology will differ from place to place,
For example - here's the US National Center on Disability and Journalism style guide and it does say that
' As you’ll see below, “high functioning” and “low functioning” are considered offensive'.
NCDJ Recommendation: Avoid using the terms “high functioning” and “low functioning.” Instead, use medical diagnoses and describe an individual’s abilities and challenges, rather than using less-specific labels.
And also there may be cases where an individual from group X doesn't use the normal terminology for group X and prefers something different... so yes it's tricky.
If someone wants to say 'the preferred terminology is X' - that's fine and it also might be helpful for them, given the global context, to say ' Where I am the preferred teminology is X' or ' I'm X and my preferred terminology is' and folk should be prepared that in other people's areas it might differ with no harm being intended.
However there is a problem when people who don't identify as disabled start telling those who do what terminology they'll be using in the face of a disabled person speaking up. Pomona raised a valid issue and that needs to be worked with more carefully.
Things would certainly be better without ableism, but having known people who were caring for a teenager who was functionally like an infant, I think I'd be terrified at the prospect of being responsible for such a person's care.
Yes. That is what my employer is about, and the population I work with are, basically, infants to toddlers. Many of them are older than I am.
The existence of this field of work is clear evidence that many parents are not up to the task, even under "good" material circumstances.
While I agree with the general thrust of this comment, disabled people including those with intellectual disabilities and neurodiverse people are generally opposed to 'functional' labels - ie, saying that a disabled adult is 'functionally' a toddler, or that eg an autistic person is 'high functioning'. With the former example, the issue is that this terminology is often used to deprive disabled people of their rights even when they clearly have the capacity to express their wishes - and it also contributes towards the infantilisation of disabled people, and the very poor support for disabled adults. The preferred terminology is 'high needs' or 'high intervention' or 'complex needs'. It also doesn't exactly help disabled people with their specific needs - saying that a disabled adult is functionally a toddler means that their actual adult needs like eg gynaecological care or prostate exams are shied away from or considered somehow obscene. This is also part of why disabled people get really substandard sex and relationships education, even though the children that abled people consider them to resemble are getting sex ed in school.
I get the drift, which is why I avoided the phrase "low functioning." At the same time, giving a specific list of the very specific limitations seemed to involve needless exposure of their private lives. These are people who need full time care because they are incapable of dressing themselves, toileting themselves, speaking, etc. Also, not all of them are autistic. There are also folks with Downs Syndrome, and some folks whose disabilities don't fall into a tidy diagnosis.
Personally, I do not think less of them for being in this position. And I would look an awful lot of ugly at someone who did. And I don't think that acknowledging that someone requires assistance with even the most basic ADL's is somehow less deserving of gynecological or prostate care. Like I said, a lot of the folks I work with a older than I am, and I'm not especially young anymore.
The observation I'm making from my professional experience is that there is a very, very heavy cost to caring for an adult with high needs, and a lot of people who push to restrict abortion even in these cases don't necessarily seem to appreciate that cost.
Going back to the abortion issues. I said earlier in the thread that I grew up with someone with Down's Syndrome - the oldest child of a friend of my mother's, very unexpected as they were giving birth to children in their early twenties. When I was posting on this thread, I did a google search to see if I could find this man's name, and did, for a few years ago, from someone raising money for the adult day care he attended at the time.
Now, assuming he survived Covid19, that Down's Syndrome boy I grew up with has to be in his late 50s or even 60 now. That means his parents are in their 80s. So even if they have managed to care for him to now, does that mean they are still caring for him in their 80s? Or is he now the responsibility of one of his younger brothers? Because day care suggests care elsewhere, and I'm not sure he was ever going to be able to live independently from my memories of him.
I see a couple of family situations of elderly parents with adults with Down's Syndrome locally, in the street, and think those older adults look so tired, still coping now.
Going back to the abortion issues. I said earlier in the thread that I grew up with someone with Down's Syndrome - the oldest child of a friend of my mother's, very unexpected as they were giving birth to children in their early twenties. When I was posting on this thread, I did a google search to see if I could find this man's name, and did, for a few years ago, from someone raising money for the adult day care he attended at the time.
Now, assuming he survived Covid19, that Down's Syndrome boy I grew up with has to be in his late 50s or even 60 now. That means his parents are in their 80s. So even if they have managed to care for him to now, does that mean they are still caring for him in their 80s? Or is he now the responsibility of one of his younger brothers? Because day care suggests care elsewhere, and I'm not sure he was ever going to be able to live independently from my memories of him.
I see a couple of family situations of elderly parents with adults with Down's Syndrome locally, in the street, and think those older adults look so tired, still coping now.
To nod at the tangent, it really comes down to the individual person.
There are people with well known disabilities who can more or less handle a menial job and might need someone to make sure they don't go over their budget.
There are people who require 24/7 supervision and hands-on support for even basic tasks.
Also, a lot of cognitive disabilities go hand in hand with physical disabilities that can get very expensive.
It really depends on the person. I think sometimes, for pro lifers, it's tempting to highlight the really positive cases. Heck, people who care for disabled folks in general often do that because it's an easy way to raise money for the entire population to focus on the individuals who are happy, reasonably attractive, and reasonably functional in society with a little help.
But I think it's a cruelty to only give attention to the easy cases.
In general, I think we should be very careful when we think of using disabled adults as a proof for or against abortion. The reality for every case is complicated enough on its own terms.
In general, I think we should be very careful when we think of using disabled adults as a proof for or against abortion. The reality for every case is complicated enough on its own terms.
Agreed - although I don't really know how you can "prove" abortion either way.
With the specific topic of the "late abortion" exemption for foetuses facing significant disabilities, the realities of what life might be like for those foetuses if they aren't aborted is clearly relevant. And to discuss that in a fair way, you have to present the whole likely range of outcomes. If you start with honest data, you can have an honest discussion. If you start with people cherry-picking examples that benefit the argument that they want to make, what you have is basically duelling dishonest polemics.
In general, I think we should be very careful when we think of using disabled adults as a proof for or against abortion. The reality for every case is complicated enough on its own terms.
Agreed - although I don't really know how you can "prove" abortion either way.
With the specific topic of the "late abortion" exemption for foetuses facing significant disabilities, the realities of what life might be like for those foetuses if they aren't aborted is clearly relevant. And to discuss that in a fair way, you have to present the whole likely range of outcomes. If you start with honest data, you can have an honest discussion. If you start with people cherry-picking examples that benefit the argument that they want to make, what you have is basically duelling dishonest polemics.
It's also a question of risk. Delivering a baby is always a physically dangerous process.
On some level, I'm pro choice because I think the mother is the single most suitable person to carry the dignity of that risk. And if you can't trust a mother with that choice, why on earth are you entrusting them to raise a child, especially if it's a particularly vulnerable one?
I think part of the problem is that it is such an invisible problem compared to say, elder care (which of course doesn't get anything like the dignity or attention it needs). Even during the pandemic, care facilities caring for disabled, non-elderly adults have had far less attention wrt their struggles around visitors and infection rates. Jo Whiley (a BBC Radio DJ) brought attention to the fact that she was offered a vaccine before her disabled sister as learning disabled people were not at first considered as a vulnerable category.
I feel that my own experiences and my peer/social group gives me enough knowledge and confidence to be able to parent a disabled child with more complex needs. But that's only a small part of the challenge when you constantly have to fight the council, the government, the benefits system etc.
The mass DNR scandal was perhaps the most damning indictment of how adults in residential care are treated.
Absolutely. It was terrifying for so many disabled people, even those of us who are not likely to need residential care.
Frankly I don't think anyone should judge someone who feels that it's too much to ask them to have a baby with Down's in such a society. The problem is systemic and institutional, and people terminating pregnancies when the foetus has Down's is a symptom not a cause.
The mass DNR scandal was perhaps the most damning indictment of how adults in residential care are treated.
Absolutely. It was terrifying for so many disabled people, even those of us who are not likely to need residential care.
Frankly I don't think anyone should judge someone who feels that it's too much to ask them to have a baby with Down's in such a society. The problem is systemic and institutional, and people terminating pregnancies when the foetus has Down's is a symptom not a cause.
As someone who works in residential care, yeah. I think I'd reasonably trust my employer with my kid, but I also know that my employer is probably above industry standard, and I can understand the many, many ways these places go rotten. In fact, we discuss a lot of common horror stories, at length, in training.
Comments
On another level, ordinary kids can get aborted too, for any reason.
And I've heard that one both ways: "I wouldn't exist if rape was a reason to be aborted because my dad was a rapist" and "I wouldn't exist if abortion were banned because my mom avoided being stuck with an abusive asshole by getting an abortion."
The real trouble is the future in anyone's life is an unknown. There is an awful lot of random stuff that goes into any one person's life, quality of life; disability is a big factor, but it's only one. And some things can weigh heavier than it, depending on the disability.
Another dark observation, I work at a facility for disabled adults, and it's a lesson that they started out as a "hospital for unwed mothers." They turned into a facility for kids with disabilities because they found that nobody would adopt a kid with very visible disabilities; they just started accumulating these kids and decided that they had to take care of them.
this pregnancy is a disaster: it's the result of rape and I cannot face nine months of carrying the results of that assault, or I cannot afford a(nother) baby, or my body cannot cope with another pregnancy this close to the last, or this pregnancy is not planned, the father is not around and I really did not mean to fall pregnant ... (I'm sure I can think of other reasons) - so aborting a pregnancy in the first trimester, (remembering that 58% of those having an abortion in England and Wales in 2020 already had had a child or stillbirth previously).
or
well, I wanted to have a child, planned to get pregnant, but I've found out that this foetus has a high risk of being Down's Syndrome / having spina bifida / sickle cell disease / other condition on a long list on the pre-natal screening list/ so this pregnancy is now a disaster and I am going to have an abortion?
Of course, if you are against abortion either is unacceptable.
I am not sure. I wonder if getting some people with the various disabilities concerned to write or dictate an account of what their life is like (and/or their parents) with a list of FAQs - that could be provided offered to a prospective parent to read if they would like to, would be a start.
If you have little experience of disability, then it may be difficult to imagine the ways in which people manage their lives. And if you work mainly with parents and infants, you are unlikely to have an extensive knowledge of what support, assistive technology and opportunities that are out there for adults with disabilities, the funding and frameworks available.
Respectfully, if you're not in the US, you may overestimate what supports we have in this country. In some states or counties, none at all for a person of small means.
Source: https://thearc.org/policy-advocacy/housing/
And that's not even getting into accessible housing, home healthcare assistance, the cost of something like a motorized wheelchair, or how difficult it is to navigate the system when there is assistance for paying for such things.
And ... that's talking about people who can basically take care of themselves, given the proper benefits. Over 6 million people in the US care for disabled adults age 18-49.
Source: The National Alliance for Caregiving, https://www.caregiving.org/caregiving-in-the-us-2020/
In short, it's incredibly hard in the US to care for someone who will be significantly disabled their entire life, and I don't blame anyone at all who takes that into account when deciding whether to carry a child to term or not.
-- Special Needs Alliance, https://www.specialneedsalliance.org/blog/adopting-a-child-with-special-needs/
The subsidies for children with special needs in foster care are larger than those for adopted children with the same needs.
Plus (and I'm sure you weren't implying otherwise) adopting a non-disabled child can have huge difficulties, because it's pretty rare for children to be up for adoption unless their home life was dire, so it's not like adoptive parents of non-disabled children are picking the easy option.
All this to say that I am very acutely aware of the problems around testing for disabilities and the ethics of abortion in that case. For me it comes down to issues like those @Ruth talks about within the US, but the UK is honestly not a great deal better. We've all heard the PIP and UC horror stories. Now throw a baby into that mix, and that's without talking about the increased risk of post-partum mental illness including post-partum psychosis. It's not that I don't think ableism with regards to abortion is important, but that there are a thousand more important discussions about ableism in society to be had first. People refuse vaccines so their kid doesn't end up like me, it's not a neutral issue for me either - but people wouldn't end up in that place of being terrified of having a disabled child if society wasn't built on institutional ableism in the first place. Pregnancy and childbirth already put anyone experiencing them at a huge economic and societal disadvantage, so I'd rather not negatively target those things first. On the contrary, things as basic as longer and better-paid parental leave would make an enormous difference especially in the US.
Indeed they are not! And even when you adopt an infant, as my best friend did, you generally face issues you simply don't have with a child you birthed.
Things would certainly be better without ableism, but having known people who were caring for a teenager who was functionally like an infant, I think I'd be terrified at the prospect of being responsible for such a person's care.
The scan may "only" look for these, but will inevitably spot other anomalies. Our baby fell within the "lethal skeletal dysplasia" category, but at 20 weeks it looked as though he had non-lethal achondroplasia.
The judges said:
(I'm not sure where the solicitor got the figures for late abortions broken down, because they are not in the abortion statistics. Under Ground E, that the child will be severely disabled, yes, Down's Syndrome accounts for the largest group, but most of those abortions are not late term.)
I might've mentioned this before, but my employer is a campus that provides housing and permanent care for disabled adults.
They started out as an adoption agency, back in the day, and noticed that they accumulated disabled children because it was extremely rare that anyone would adopt them.
No disrespect to people who adopt, I know some, and it's hard even under good circumstances.
The existence of this field of work is clear evidence that many parents are not up to the task, even under "good" material circumstances.
A couple we know could not have children of their own. They deliberately adopted 2 disabled children, saying that they were in a position where they could care for them.
While I agree with the general thrust of this comment, disabled people including those with intellectual disabilities and neurodiverse people are generally opposed to 'functional' labels - ie, saying that a disabled adult is 'functionally' a toddler, or that eg an autistic person is 'high functioning'. With the former example, the issue is that this terminology is often used to deprive disabled people of their rights even when they clearly have the capacity to express their wishes - and it also contributes towards the infantilisation of disabled people, and the very poor support for disabled adults. The preferred terminology is 'high needs' or 'high intervention' or 'complex needs'. It also doesn't exactly help disabled people with their specific needs - saying that a disabled adult is functionally a toddler means that their actual adult needs like eg gynaecological care or prostate exams are shied away from or considered somehow obscene. This is also part of why disabled people get really substandard sex and relationships education, even though the children that abled people consider them to resemble are getting sex ed in school.
When we were told our baby was a dwarf, I didn't even realise that was a diagnosis. I thought it was just a synonym for "small for dates." There was a very big penny-dropping moment when I realised, a couple of days after being given the diagnosis!!
I had been told that I was going to get a Doppler scan, and I looked up "Doppler" in the index of a medical textbook. Just below "Doppler" in the index was "dwarfism" and I thought "that's odd, the non-medical term the consultant has been using is in this book." And then I realised.
I knew about Down's, obviously, and some of the Trisomies, and obviously I'd seen people with dwarfism, but it never occurred to me that dwarfism was a condition which might affect a child of mine.
As a measure of how little I knew, the only fact I could think of was that the actor inside R2D2 in Star Wars was a dwarf, and so I started my research in the Star Wars section of the library. This turned out to be a good starting point because I discovered that Kenny Baker, the R2D2 actor, was married, with children, and clearly hadn't been held back by his condition.
If I'd realised during the hospital appointment that "dwarf" was a diagnosis, and had asked questions then, the initial information might have been more clinical and negative, and less "a glittering career in Hollywood awaits!"
These terms communicate almost nothing to a general audience, however. @Bullfrog's description - that the people he cares for need similar levels of care and have similar capabilities as infants and toddlers - communicates clearly the level of challenge that would be involved for a parent who might have adopted one of them as a small child.
Most people know roughly what a toddler can do, so Bullfrog's description is calibrated to something that almost everyone can relate to. "High needs" could mean almost anything.
So whilst I get what you're saying, I think Bullfrog's use communicates much better. Is there a phraseology that you think could satisfy the need both to respect the language that you say disabled people prefer, and communicates what Bullfrog wants to communicate to a general audience?
Preferred by whom, please?
The problem with any words we use is that they change meaning: it didn't take long for the school terminology of "special needs" to reach the playground as an insult: "He's speshul, he is!"
Hello, let's not go down a tangent away from the topic (abortion) of this thread. It could make a good new thread to discuss terminology though!
But in the meantime -
Reminding posters that this is Epiphanies and sensitivity around preferred terminologies is really important. To post on topics here, please take the time to find out what is the currently accepted terminology used in your region by those most directly affected and especially what those most directly affected prefer.
As Curiosity says it can be 'an ever moving target' - things change all the time, so what people were taught can swiftly go out of date.
It's also a global board so terminology will differ from place to place,
For example - here's the US National Center on Disability and Journalism style guide and it does say that
https://ncdj.org/style-guide/
But it prefers a different solution again!
And also there may be cases where an individual from group X doesn't use the normal terminology for group X and prefers something different... so yes it's tricky.
If someone wants to say 'the preferred terminology is X' - that's fine and it also might be helpful for them, given the global context, to say ' Where I am the preferred teminology is X' or ' I'm X and my preferred terminology is' and folk should be prepared that in other people's areas it might differ with no harm being intended.
However there is a problem when people who don't identify as disabled start telling those who do what terminology they'll be using in the face of a disabled person speaking up. Pomona raised a valid issue and that needs to be worked with more carefully.
Thanks very much.
Louise
Epiphanies Host
Hosting off
I get the drift, which is why I avoided the phrase "low functioning." At the same time, giving a specific list of the very specific limitations seemed to involve needless exposure of their private lives. These are people who need full time care because they are incapable of dressing themselves, toileting themselves, speaking, etc. Also, not all of them are autistic. There are also folks with Downs Syndrome, and some folks whose disabilities don't fall into a tidy diagnosis.
Personally, I do not think less of them for being in this position. And I would look an awful lot of ugly at someone who did. And I don't think that acknowledging that someone requires assistance with even the most basic ADL's is somehow less deserving of gynecological or prostate care. Like I said, a lot of the folks I work with a older than I am, and I'm not especially young anymore.
The observation I'm making from my professional experience is that there is a very, very heavy cost to caring for an adult with high needs, and a lot of people who push to restrict abortion even in these cases don't necessarily seem to appreciate that cost.
I appreciate the correction.
Now, assuming he survived Covid19, that Down's Syndrome boy I grew up with has to be in his late 50s or even 60 now. That means his parents are in their 80s. So even if they have managed to care for him to now, does that mean they are still caring for him in their 80s? Or is he now the responsibility of one of his younger brothers? Because day care suggests care elsewhere, and I'm not sure he was ever going to be able to live independently from my memories of him.
I see a couple of family situations of elderly parents with adults with Down's Syndrome locally, in the street, and think those older adults look so tired, still coping now.
That or staying on topic.
Gwai,
Epiphanies Host
[Popping in to say a thread was got and some posts above were split off - Louise Epiphanies Host]
To nod at the tangent, it really comes down to the individual person.
There are people with well known disabilities who can more or less handle a menial job and might need someone to make sure they don't go over their budget.
There are people who require 24/7 supervision and hands-on support for even basic tasks.
Also, a lot of cognitive disabilities go hand in hand with physical disabilities that can get very expensive.
It really depends on the person. I think sometimes, for pro lifers, it's tempting to highlight the really positive cases. Heck, people who care for disabled folks in general often do that because it's an easy way to raise money for the entire population to focus on the individuals who are happy, reasonably attractive, and reasonably functional in society with a little help.
But I think it's a cruelty to only give attention to the easy cases.
In general, I think we should be very careful when we think of using disabled adults as a proof for or against abortion. The reality for every case is complicated enough on its own terms.
Agreed - although I don't really know how you can "prove" abortion either way.
With the specific topic of the "late abortion" exemption for foetuses facing significant disabilities, the realities of what life might be like for those foetuses if they aren't aborted is clearly relevant. And to discuss that in a fair way, you have to present the whole likely range of outcomes. If you start with honest data, you can have an honest discussion. If you start with people cherry-picking examples that benefit the argument that they want to make, what you have is basically duelling dishonest polemics.
It's also a question of risk. Delivering a baby is always a physically dangerous process.
On some level, I'm pro choice because I think the mother is the single most suitable person to carry the dignity of that risk. And if you can't trust a mother with that choice, why on earth are you entrusting them to raise a child, especially if it's a particularly vulnerable one?
[rhetorical you, of course]
I feel that my own experiences and my peer/social group gives me enough knowledge and confidence to be able to parent a disabled child with more complex needs. But that's only a small part of the challenge when you constantly have to fight the council, the government, the benefits system etc.
Absolutely. It was terrifying for so many disabled people, even those of us who are not likely to need residential care.
Frankly I don't think anyone should judge someone who feels that it's too much to ask them to have a baby with Down's in such a society. The problem is systemic and institutional, and people terminating pregnancies when the foetus has Down's is a symptom not a cause.
As someone who works in residential care, yeah. I think I'd reasonably trust my employer with my kid, but I also know that my employer is probably above industry standard, and I can understand the many, many ways these places go rotten. In fact, we discuss a lot of common horror stories, at length, in training.